When Doctors Don't Know What's Wrong

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The first patient I ever saw as a first year resident came in with a litany of complaints, not one of which I remember today except for one—he had headaches.  The reason I remember he had headaches isn’t because I spent so much time discussing them but rather the opposite:  at the time I knew next to nothing about headaches and somehow managed to end the visit without ever addressing his at all, even though they were the primary reason he’d come to see me.

Then I rotated on a neurology service and actually learned quite a lot about headaches.  Then when my patient came back to see me a few months later, I distinctly remember at that point not only being interested in his headaches but actually being excited to discuss them.

I often find myself thinking back to that experience when I’m confronted with a patient who has a complaint I can’t figure out, and I thought it would be useful to describe the various reactions doctors have to patients in general when they can’t figure out what’s wrong, why they have those reactions, and what you can do as a patient to improve your chances in such situations of getting good care.

THE SCIENTIFIC METHOD

Believing a wacky idea isn’t wacky in and of itself.  Believing a wacky idea without proof, however, most certainly is.  Likewise, disbelieving sensible ideas without disproving them when they’re disprovable is wacky as well.  Unfortunately, patients are often guilty of the first thought error (“My diarrhea is caused by a brain tumor”) and doctors of the second (“brain tumors don’t cause diarrhea, so you can’t have a brain tumor”), leading in both instances to contentious doctor-patient relationships, missed diagnoses, and unnecessary suffering.  Doctors sometimes aren’t willing to order tests that patients think are necessary because they think the patient’s belief about what’s wrong is wacky; they sometimes suggest a patient’s symptoms are psychosomatic when every test they run is negative but the symptoms persist; and they sometimes offer explanations for symptoms the patient finds improbable but refuse to pursue the cause of the symptoms any further.

Sometimes these judgments are correct and sometimes they’re not—but the experience of being on the receiving end of them is always frustrating for patients.  However, given that your doctor has medical training and you don’t, the best you can sensibly hope for are judgments based on sound scientific reasoning rather than unconscious bias.  Unfortunately, though, even the minds of the most rational scientists are teeming with unconscious biases.  So a more realistic strategy might be to attempt to leverage your doctor’s biases in your favor.

EXPERT VS. NOVICE THINKING

In order to do this, you first need to know how doctors are trained to think.  Medical students typically employ what’s called “novice” thinking when trying to figure out a diagnosis.  They run through the entire list of everything known to cause the patient’s first symptom, then a second list of everything known to cause the patient’s second symptom, and so on.  Then they look to see which diagnoses appear on all their lists and that new list becomes their list of “differential diagnoses.”  It’s a cumbersome but powerful technique, its name notwithstanding.

A seasoned attending physician, on the other hand, typically employs “expert” thinking, defined as thinking that relies on pattern recognition.  I’ve seen carpal tunnel syndrome so many times I could diagnose it in my sleep—but only learned to recognize the pattern of finger tingling in the first, second, and third digits, pain, and weakness occurring most commonly at night by my initial use of “novice” thinking.  The main risk of relying on “expert” thinking is early closure—that is, of ceasing to consider what else might be causing a patient’s symptoms because the pattern seems so abundantly clear.  Luckily, in most cases, it is clear.

But sometimes it isn’t.  In those cases, your doctor may do one or more of the following:

  1. Revert to “novice” thinking.  Which, in fact, is completely appropriate.  We’re taught in medical school that approximately 90% of all diagnoses are made from the history, so if we can’t figure out what’s wrong, we’re supposed to go back to the patient’s story and dig some more.  This also involves reading, thinking, and possibly doing more tests, for which your doctor may or may not have the stamina.
  2. Ask a specialist for help.  Which requires your doctor to recognize he or she is out of his or her depth and needs help.
  3. Cram your symptoms into a diagnosis he or she does recognize, even if the fit is imperfect.  Though this may seem at first glance like a thought error, it often yields the correct answer.  We have a saying in medicine:  uncommon presentations of common diseases are more common than common presentations of uncommon diseases.  In other words, presenting with a set of symptoms that are unusual or atypical for a particular disease doesn’t rule out your having that disease, especially if that disease is common.  Or as one of my medical school teachers put it:  “A patient’s body frequently fails to read the textbook.”
  4. Dismiss the cause of your symptoms as coming from stress, anxiety, or some other emotional disturbance.  Sometimes your doctor is unable to identify a physical cause for your symptoms and turns reflexively to stress or anxiety as the explanation, given that the power of the mind to manufacture physical symptoms from psychological disturbances is not only well-documented in the medical literature but a common experience most of us have had (think of “butterflies” in your stomach when you’re nervous).  And sometimes your doctor will be right.  A physician named John Sarno knows this well and has a cohort of patients who seem to have benefited greatly from his theory that some forms of back pain are created by unconscious anger.  However, the diagnosis of stress and anxiety should never be made by exclusion (meaning every other reasonable possibility has been appropriately ruled out and stress and anxiety is all that’s left); rather, there should be positive evidence pointing to stress and anxiety as the cause (eg, you should actually be feeling stressed and anxious about something).  Unfortunately, doctors frequently reach for a psychosomatic explanation for a patient’s symptoms when testing fails to reveal a physical explanation, thinking if they can’t find a physical cause then no physical cause exists.  But this reasoning is as sloppy as it is common.  Just because science has produced more knowledge than any one person could ever master, we shouldn’t allow ourselves to imagine we’ve exhausted the limits of all there is to know (a notion as preposterous as it is unconsciously attractive).  Just because your doctor doesn’t know the physical reason your wrist started hurting today doesn’t mean the pain is psychosomatic.  A whole host of physical ailments bother people every day for which modern medicine has no explanation:  overuse injuries (you’ve been walking all your life and for some reason now your heel starts to hurt); extra heart beats; twitching eyelid muscles; headaches.
  5. Ignore or dismiss your symptoms.  This is different from the application of a “tincture of time” that doctors often employ to see if symptoms will improve on their own (as they often do).  Rather, this a reaction to being confronted with a problem your doctor doesn’t understand or know how to handle.  That a doctor may ignore or dismiss your symptoms unconsciously (as I did with my first-ever patient) is no excuse for doing so.
A DOCTOR’S BIASES

Just which of the above approaches a doctor will take when confronted with symptoms he or she can’t figure out is determined both by his or her biases and life-condition—and all doctors struggle with both.  To obtain the best performance from your doctor, your objective is to get him or her into a high a life-condition and as free from the influences of his or her biases (good and bad) as possible.

Negative influences on a doctor’s life-condition include all the things that negatively influence yours, as well as the following things that may happen to them on a daily basis:

  1. They fall behind in clinic.  Your doctor may be naturally slow or frequently have to spend extra time with patients who are especially ill or emotionally upset.
  2. They have to deal with difficult or demanding patients.  Hard not to enter into a defensive, paternalistic posture when too many of these types of patients show up on your schedule.
  3. They feel like they don’t have enough time to do a good job.  With fewer and fewer resources, doctors are being asked (like everyone) to do more and more.
  4. They have to deal with a morass of paperwork in a hopelessly inefficient health care system.  The amount of time most doctors must spend justifying their decisions to third-party insurance carriers is growing at an alarming rate.

A sampling of unconscious biases that influence doctor behavior include:

  1. Not wanting to diagnose bad illnesses in their patients.  Leading sometimes to an incomplete list of differential diagnoses.
  2. Not wanting to induce anxiety in their patients.  Leading sometimes to insufficient explanations of their thought processes, which often paradoxically leads to more patient anxiety.
  3. Over-relying on evidence-based medicine.  Though the practice of evidence-based medicine should be the standard, many physicians forget there’s a great difference between “there’s no evidence existing in the medical literature to link symptom X with disease Y” and “there’s no evidence existing to link symptom X with disease Y because it’s not yet been studied.”
  4. Not liking their patient.  Leading to impatience, not listening, and not taking enough time to think though the patient’s complaints.
  5. Liking their patient too much.  Leading to biases #1 and #2.
  6. Thinking a patient’s symptoms are caused by one diagnosis instead of many.  Also known as Ockham’s razor, sometimes it’s true and sometimes it isn’t.
  7. Wanting to be right more than wanting their patient to get betterRes ipsa loquitur (the thing speaks for itself).
  8. Believing their first thoughts about the diagnosis are more likely to be correct than any subsequent thoughts.  If your doctor is too attached to a diagnosis simply because it’s the one he or she thought of first or has seen more than other, less common diagnoses, he or she may avoid pursuing other possibilities.
  9. Failing to consider that a test result may be in error.  This doesn’t happen commonly, but it certainly does happen.
  10. Wanting to avoid feeling ineffectual.  Some diagnoses are more amenable to therapy than others.  No patient wants to have an untreatable illness and no doctor wants to diagnose it.
  11. Having an aversion to being manipulated.  Manipulation is especially common in patients suffering from chronic pain syndromes (who may at times appear drug-seeking rather than pain relief-seeking).  No one likes to be manipulated, but a wise mentor of mine once said, “The question isn’t whether or not your patients will try to manipulate you.  The question is how will they try to manipulate you.”  Coming to terms with this truth is vital for any doctor to have successful relationships with their patients.
HOW TO GET YOUR DOCTOR ON YOUR SIDE

Unfortunately, your ability to raise your doctor’s life-condition is as limited as your ability to raise anyone else’s and even more so when you don’t feel well.  Good humor, if you can muster it, may be your best option.

But in dealing with your doctor’s biases, you have on your side a fact I firmly believe to be true:  most doctors want to do a good job and help their patients as best they can.  So what exactly can you do to maximize your doctor’s ability to help you?

  1. Position your symptoms and requests carefully.  Don’t demand medications or tests.  Ask about them.  Wonder about them.  It’s perfectly all right to bring up research you’ve done about your symptoms, but explicitly express your openness to the possibility that your ideas might be wrong.  Not that you should aim for subservience by any means, but rather for a genuine partnership.
  2. Remain reasonable even when you’re irritated.  Most doctors, even when stressed, will respond to reason and reasonableness in kind.
  3. If your doctor suggests your symptoms might be due to stress, acknowledge he or she may be right.  Even if you disagree.  First of all, your doctor may be right, even if it doesn’t feel that way to you.  Secondly, if you dismiss the notion out of hand, you might make your doctor defensive and therefore more likely to cling to an idea that a moment before was only one possibility among many.
  4. Ask questions that promote transparent, logical thinking.  Many doctors don’t explain their thought processes clearly.  Write all your questions down before your visits and ask smart questions that actually help your doctor think through your symptoms and his or her approach to working them up (“What possibilities will this test rule in or out?” “What else is on your list of possible diagnoses?”).  Of course, this presumes you’re comfortable knowing the answers.  I recommend you summon your courage to ask these questions, however, because they’ll encourage sharper thinking from your doctor.
  5. Be explicit about how you want your doctor to work with you.  Show them you’re interested in understanding the process of medical detective work.  Position yourself as your doctor’s student.  Nothing helps improve someone’s thought process like having to explain it to someone else.
  6. Ask your doctor to explain the risks and benefits of any proposed test or treatment quantitatively.  Get percentages for risks and compare them to the risks of activities you tolerate every day.  For instance, your annual risk of dying in a motor vehicle accident is 0.016%.  You’d be surprised how many worrisome side effects to drugs, for example, occur at an even lower frequency.
  7. Get second opinions.  And sometimes third opinions.  And sometimes more.  Do this carefully, recognizing that in doing so you risk ending up even more confused than you were with only one opinion.  But don’t assume because your doctor doesn’t know what’s going on that no one else does either.  There’s almost no way for you to be sure your doctor doesn’t know what’s wrong because he or she doesn’t know or because no one knows.  Sometimes you have to go through multiple doctors until you finally find the right one with the right experience to figure out your problem (if your insurance will let you, of course).  Neither doctors nor patients like to acknowledge this, but serendipity sometimes plays a role in arriving at the right diagnosis.  I once figured out why a patient had been nauseated for 30 years after they’d been seen by almost as many doctors.  The patient said something that just happened to make me think of an obscure diagnosis I’d never seen but had read about.  I looked it up, sent the patient for a test, and found the answer.

I have a small cadre of patients who suffer from symptoms more horrible than I can describe, some with known diagnoses and some without.  In all cases, my ability to help them is tragically limited.  Sometimes I want to ignore these patients.  Sometimes I cringe when they call, not because I don’t like them or because they complain to me too much or because I don’t care about them but because I have so little real relief to offer them.  I know how much my simply being present and being willing to listen has meant to them (they tell me this all the time) and I don’t discount it.  And I do my best to diagnose and treat what problems I can and sympathize with them when I can’t.  But it’s hard.  I must constantly be on guard not to fall under the influence of all the thought errors and biases I’ve described here.  So while I hope everyone who reads this post finds it helpful, I have to confess that the person to whom I actually wrote it was myself.

NEXT WEEK: Marriage As A Business Proposal

97 comments to When Doctors Don’t Know What’s Wrong

  • Outstanding post, Alex. As a veterinarian, I believe that not only should everyone read this masterfully written essay, but they should also share it with as many others as possible — particularly their physician and veterinarian.

    Mort: Thanks. And thanks for pointing out the relevance to veterinarians as well.

    Alex

  • Bill Acker

    Thanx…Alex…that’s all the shit that happened to me???????? Not to mention the physiotherapists…that think they know…everything??????? Why do doctors send their patients to physiotherapy…when they don’t know whats wrong with them!!!!!

  • Andrea

    My new primary has 3500 patients. This terrifies me. But I didn’t do well in the old days when the great specialists still called the shots. I have found doctors, even specialists at the best hospitals in the country, are too dependent on tests or don’t know the proper test. I was told my GI problems “were all in my head” until I had massive hemorrhaging, my blood supply replaced twice in two weeks, and finally had surgery to remove small intestine. Classic small bowel Crohn’s; but even during the hemorrhaging I passed the tests. I passed the tests for dry eyes because the test was not conclusive. By then I was reading at the Countway Medical Library and found an article that led me to the ophthalmologist who had developed a new test. I failed it and he saved my corneas. The old test is still used. I saw twenty seven doctors for what turned out to be interstitial cystitis. Again I found the twenty eighth who immeidiately knew what I had. But that took three years and the pain and symptoms were so severe I developed suicidal ideation. Every urologist I saw told me it “was all in my head” but refused to call the psychiatrist I was seeing. I found the right doc by reading at the Countway for six months. I was B12 deficient, but I passed the old test. The newer one was flagged; I failed the tuning fork test by then. For years I kept saying, how could I have enough B12 when I don’t have a terminal ileum and intrinsic factor? Ironically, the only easy diagnosis I got was for chronic fatigue syndrome, a disease still not accepted by many physicians. But all my reading helped; I spoke the same language as the doctors. I started editing their work. There is one bias I think you failed to mention: women—especially young women—are not taken as seriously as men by many doctors. And if they go to appointments without an accompanying male, it’s worse.

    Andrea: 3500 patients in your primary care doc’s practice is a bit frightening indeed. I certainly agree with you that many doctors don’t know the correct application of many tests they order and over rely on the ones they do. You can interpret the same test differently depending on the complex of symptoms for which it’s ordered. Good for you for being such a staunch and informed advocate for your own health. You kept asking questions your doctors should have been asking until you found one who was willing to ask them with you. And thanks for your last point, a bias that’s probably more prevalent than I’d like to believe.

    Alex

  • Andrea

    There had been a shortage of primary care physicians in MA for a while, but when universal health care was made mandatory in MA it went through the roof. And I live across the river from Boston, home of many great hospitals. I have friends with good insurance who are on waiting lists for a PCP. See article in today’s N.Y.Times re: PCP shortage. Also, twenty years ago, my primary was my gastro, who saw internal medicine patients. His hospital made him stop because he is a specialist. My next primary, a brilliant woman, had to give up her internal medicine practice because she’s an ID specialist. Then there are the doctors who don’t take Medicare or who’ve opened concierge practices. It is scary. My primary does have a new colleague and just hired a N.P., but it still frightens me. So your list of 1, 2, 3, 4 don’t even seem like biases to me. I can’t envision how one person can do so much. T hree of my uncles were doctors, two internists. They had very different lives from doctors today. Time for their patients, time for themselves.

    If I hadn’t kept searching for answers, I would be dead. But I always looked for answers in books and borrowed an ID so I could get into the Countway. Also, when I was hospitalized with Crohn’s at Mass General two years after my surgery and no one in that great hospital knew what to do, I had two amazing visitors. Dr.Sidney Farber, the father of modern cancer treatmment, was a friend of my family on both parents’ sides. He brought Dr. Franz Inglefinger with him, the great gastro, who later humanized the New England Journal. They told me too many people are told they have hopeless cases who don’t, that doctors aren’t gods, that I was correct about what I’d observed about my Crohn’s, and I’d get better. I never forgot their words and kept looking for the special doctors who thought “outside the box.”

  • Thanks for this interesting insight. I work for a University and meet countless school students who want to become doctors. Some of them are great people who are really caring and genuinely want to help people, and I have no doubt they will make great doctors. But some just want to enter the profession for the status of it, or because their parents think they should, etc. Their future patients will certainly have very different experiences!

    Julian: I keep hoping one benefit of all the turmoil in health care these days (at least in the U.S.) is that we’ll see fewer students wanting to go into medicine for the wrong reasons, but perhaps I’m being overly optimistic…

    Alex

  • Fantastic post!!! I’m just home from work—and I really didn’t want to read such a long post, but I did—that’s how good it is.

    As a medical librarian, I’m partial to #3, over-relying on evidence-based medicine—so true! There just aren’t studies on everything & it takes a lot of good studies to come up with the meta-analysis required for evidence-based medicine. And not everyone fits the mold, anyway.

    It’s clear to me that your patients benefit from your Buddhist training, because it’s given you such insight into your own thought processes re: how you diagnose & react to your patients.

    And re the value of listening to a patient—you’re right on the money—for so many reasons!

    Also thought your advice on “HOW TO GET YOUR DOCTOR ON YOUR SIDE” was so valuable. I think often patients don’t understand how their own attitudes can make their physicians feel defensive & negative. Hey, doctors are only human.

    If you don’t mind I’d love to include an excerpt & link to this post on my blog sometime!

    Cheers!

    Healthy Librarian: Thanks so much for your kind words (I keep trying to write short posts and failing…). And feel free to excerpt and link to this post anytime.

    Alex

  • Andrea

    Healthy Librarian, I wish I had the article I wrote when Arnold Relman became the editor of the New England Journal and spoke for the Boston Chapter of the American Medical Writer’s Association. In summary: an article that we publish on Thursday can be proven wrong by Friday. He cited some that were proven incorrect within five years.

    On how to get your doctor on your side: don’t waste time. My psychiatrist told me to type a time line with symptoms on ONE sheet of paper. Two sides covered thirteen years. They could pick and choose what jumped out at them. They loved it. And then I have to thank my late mother who was never sick but took care of everyone else. She just happened to have a particular doctor’s favorite home made cinnamon buns with her, or for the more health conscious, her homemade bread. Now, my docs are very health conscious, but I know their guilty pleasures. I start at Xmas, when such things are appropriate. And when I leave a visit, I often thank my docs for their help. They deserve it.

    Alex, I was especially touched by your last paragraph. I have a close friend who falls into this category and I know her relationship with her doctor helps sustain her. Sometimes compassion is all a doctor has to offer, but it is a great gift. Friends and family often flee these people. One of my doctor uncles said, “First we’re men, then we’re doctors.” No one is perfect; don’t be so hard on yourself.

    Andrea: Thanks. I try to ask myself when other doctors want to refer challenging patients my way, “If not me, then who?” It’s hard to be a doctor to these patients, but, really, why else be a doctor if not for these patients?

    Alex

  • Rob L.

    What a triumphant, rich, useful piece of writing. This argues well for not just a full-length book, but for a full-length important book. Possibly a musical. Seriously, it’s cathartic to see all this stuff articulated and categorized so thoroughly and even-handedly, and to discover solutions that involve everyone. This primer should be widely publicized and could help countless souls do better in the doctor’s office. Each paragraph is self-contained and deeply satisfying to read. Keep it up. And thanks!

  • Andrea

    Years ago when I was looking for an internist, before the shortage, a brilliant doctor I’ve known forever (he was my intern at Mass General when I was twenty-two) said he knew the perfect doc for me. It was a husband and wife team. I spoke to the wife and her response was: “A patient like you would be an abuse of my time.” I was rather shocked, especially since I had really great specialists in place. I was writing for the head of pediatric gastroenterolgy at Children’s and told him, “It never ceases to amaze me what people will say.” I’ve seen a few docs burn out, but they were specialists who ONLY had tragic patients. If you can balance your practice, you’ll be safe.

    Andrea: Your last point is especially right on.

    Alex

  • Wendy H.

    I have been looking for an article like this that will tell me how I can get my doctors to widen their view of my diagnosis. The hardest thing is that I have the benefit of knowing exactly how I feel and that I am not “imagining it”—but doctors don’t know this. I suspect that I actually have two quite serious conditions—I’ve had one for 9 years (which I suspect is some kind of infection of spinal fluid—evidence—when taking a round of acyclovir for shingles my symptoms dramatically improved), and another for only 2-3 years (autoimmune condition caused by exposure to radiation and toxic chemicals—evidence—Raynaud’s and neuropathy). When I finally got to see my MD with the new evidence about the acyclovir I was so excited about this clue to what was wrong with me—that I think I actually scared the MD and they thought that I was a total nut case. They kept saying how my symptoms were impossible and that there was no connection between them and the acyclovir. They keep wanting to do the same tests over and over (blood work, breathing tests, chest x-rays) and I want to find some way to jog them out of this endless loop. Seriously—on the acyclovir it was like I had been brought back to life—I could breathe better, my heartbeat was stronger, I could walk up hill with no difficulty, I even found my thought processes quicker and sharper. To not have this phenomenon taken seriously was terribly disappointing to me.

    Do you think if I had printouts from a reputable site like medpage today or medline that it would help to get the doctor on my side? I don’t have a printer at home, but I could get printoffs in town. Sorry to hear about your heavy work/stress load—I am sure most of your patients really appreciate your help—so often I would like to do something nice for the doctor, but I’m not sure what—perhaps you could do a column on that? And maybe it would be soothing for you to think about something pleasant—ie, what would be the nicest thing that a patient could do for me? Thank you notes, gift certificates, hot coffee, homemade bread, fresh flowers? Aromatherapy products? Just discovered your excellent site; so sorry for being verbose.

    Wendy: Your situation gets at the heart of one of the points in my post. When doctors hear from patients things like “acyclovir made me feel so much better” but they have no idea how it could have, rather than imagine a real process is going on that rationally explains how and why acyclovir could have made you feel better, they reflexively dismiss your experience. That’s the unforgivable mistake. Certainly there is the placebo effect and the thought error that patients often make believing that if an improvement followed an intervention closely in time that the intervention necessarily caused the improvement. But if, while on a drug, the improvement PERSISTS (probably more than 2-4 weeks) and then when the drug is removed the improvement disappears, cause and effect IS actually likely. And just because we don’t understand how it could possibly be, your experience is an important phenomenon that should make us ask, “How COULD acyclovir make you feel better?” This is how scientific knowledge is advanced. Maybe we can’t answer that question but there are hundreds of drugs that help hundreds of diseases and we have no idea why—but still prescribe them. Perhaps if you calmly presented this kind of reasoning you might get your physician thinking more scientifically and less with his or her bias that “we already know everything about acyclovir and it doesn’t do what she says it does so she must be crazy or something.”

    Regarding what patients can do for doctors to show their appreciation: all the things you mentioned are quite nice. I’d stay away from monetary gifts (money, gift certificates) as that feels a little uncomfortable to receive (at least to me). Genuine and personal expressions of appreciation are always welcome. For me, an acknowledgment about what specifically I’ve done to help a patient is absolutely the best thing, whether it was listening with a compassionate ear, listening with an open mind, or doing some really great detective work and figuring out a difficult diagnosis. Like anyone else, doctors like to be appreciated for what they do well. And don’t worry about me: I’m committed to helping people who are hard to help (as long as my practice has a mix of people who are easy to help to balance it out!).

    Alex

  • Helen Smith

    I truly enjoyed reading this article and all the comments. Unfortunately throughout my life I have often presented with symptoms that stump doctors. When I don’t feel good, I avoid a doctor visit until I am truly miserable for fear of being told it is all in my head or that I need a psychiatrist, or even that I am faking the symptoms. I am really traumatized.

    In almost all instances, eventually someone figured out what the problem was. There is no easy solution. Internet access has been helpful because now I can do research on my own and that has helped me find probable cause in some cases which I can then present to a physician for follow up.

    In the final analysis, medicine is a business. If the problem takes a long time to diagnose, those involved may be losing money so they become disinterested. Even if the physician is extremely dedicated, he or she may not have sufficient expertise. What is really upsetting, however, is the abuse that I have been subjected to.

    On one occasion an ER intern had me discharged even though I was unable to walk or talk. The attending physician, who had advised me to go to the ER in the first place, had instructed the intern to do just that. I did finally get to the bottom of that problem, no thanks to either the attending or the intern, but I am still shaken from the experience.

    Helen: It IS traumatizing to feel like you’re being ignored, especially when your health is at risk from it. I wish experiences like yours were a lot rarer than they probably are.
    Alex

  • Wendy H.

    Regarding Helen Smith and medicine as business—I don’t think this is always true, for I come from a country with socialized medicine, and doctors are still quite capable of ignoring or minimizing problems. I think that being overwhelmed by many demands may be more key and other psychological factors—when I was younger I always thought my doctor was this perfect, scientific entity—but they are only humans after all (smart, educated humans) who have personalities that can influence how they work.

    Wendy: I completely agree with you that daily demands overwhelming imperfect people (physicians) have a far greater effect on the service they deliver than disinterest in patients due to financial considerations (not that the latter doesn’t happen sometimes as well—just, in my experience, far less often).

    Alex

  • Virago

    Dr. Lickerman,

    Thank you from the bottom of my cynical heart for your incredibly balanced article. You are a doctor and a person of great wisdom, character and compassion. The latter is more important. As a Roman Catholic with a lifelong fascination with comparative religion (including Buddhism; I re-read the Dao each year), I am quite sure of three things: 1) Your faith has given you insights, 2) My own faith combined with an iron will has kept me alive and sane, and 3) Faith has not only carried me through life and death situations, it has taught me not to fear death. Just before entering the operating room before neurosurgery nearly four years ago, I felt wrapped in a blanket of prayer. I wasn’t afraid, but I was insulted when the nurses asked if I had a pierced tongue or any piercings below the neck. For some reason they were amused by my indignation.

    Doctors with both intelligence/skill and compassion are rare. Over the past 9 years my health has deteriorated so badly that I have been advised not to live alone or to be left alone for more than 48 hours. During this time, I have been treated by exactly 5 doctors with integrity, and advised by another, my best friend from USC (she has a BS in Neurobiology, an MPH, and is a DO). I did everything I could to work with several doctors to find a reason & treatment for a cluster of neurological disorders, including arriving at every apointment with a list of questions, a list of symptons, and a chart depicting every aspect of chronic migraine. I had monthly calendars describing each migraine, cause, medications taken, and side effects. I’ve had migraines for 27 years. Then I had Bell’s Palsy & inflamed ganglia at the base of my brain simultaneously, both of which left permamnent nerve damage. As Churchill said: “It was not the end, nor the beginning of the end, but the end of the beginning.” The beginning was a downward spiral.

    I endured side effects from every Rx, and the migraines escalated until I had an uninterrupted migraine for 1 year + eleven months. It was not characteristic of rebound headaches AT ALL. Agonizing pain made me “grey out,” lose partial vision in one eye when it was at its worst, develop expressive aphasia, and be unable to sleep for up to 3 days at a time. Describing symptoms lucidly—when I was able to write and speak—and returning almost full bottles of painkillers which failed to work did not stop accusations of psychosomatic illness, drug cravings, Munchausen’s syndrome, and malingering. In group meetings of patients w/severe migraines, cluster headaches, MS, etc., Anglo-Saxon patients were offered methadone for chronic pain and sedatives for sleepless nights caused by pain. I was told I could have nothing but the intolerable anti-depressants because “narcotics, sedatives, and tranquilizers are habit-forming.”

    I am a Black Creole from a respectable New Orleans family—MY COUSIN GENERAL RUSSELL HONORE WAS SENT TO NEW ORLEANS AFTER HURRICAINE KATRINA TO HELP DIRECT THE CLEAN UP—without a criminal record, without any addictions, without any experience of using illegal drugs or abusing liquor, AND a graduate of the University of Southern California, where I spent nearly three years working for the Neural Research Department as a library research aid & administrator’s aid. My double BA is in International Relations and French, with a German minor.

    The worst aspect of this all was not being fired from 2 jobs for medical reasons (I’ve discovered that both were illegal acording to state and federal labor laws), the racial, gender & intellectual predjudice with which I was addressed despite every effort I made to prove I was neither neurotic nor a secret drug addict, the hospital nurse who asked me how I managed to get through each day without considering or attempting suicide, the nurse who took took my morning vital stats the morning after I was hospitalized with cellulitis in both feet, septicemia & suspected myocarditis, left the room AND DEMANDED TO BE REASSIGNED BECAUSE SHE DID NOT WANT TO BE RESPONSIBLE FOR A “HIGH RISK” PATIENT, the ER doctor who allowed a CT scan but refused to x-ray my head after a fall fractured my skull, the neurosurgeon who insisted that a post-surgical ear infection was simply a ‘chronic pain perception” for 6 days after surgery, the Director of the Neurology Department who violated my civil rights by FORCING me to see a pyschiatric social worker by saying that he would not prescribe any painkillers or give me a referral for accupuncture unless I saw the pseudo-shrink, or even the same neurologist who blocked my efforts to receive state disability payments until just before the deadline ran out.

    THE WORST ASPECT WAS THAT I HAD UNDIAGNOSED TRIGEMINAL NEURALGIA FOR TWO YEARS. This condition is not psychosomatic and is excruciatingly painful.

    By that time, the TN was so far advanced that microvascular decompression surgery was my only chance for improvement. The surgeon found THREE places where the nerve was tangled with a vein and had to make a seven-inch incision and drill an enormous hole in my skull that has not fused completely. Ten days after surgery the TN returned. I HAVE NOT BEEN WELL FOR A DAY SINCE.

    I also developed recurring edema. Seven weeks after surgery I developed an almost fatal case of acute pancreatitis. (I politely asked a doctor to stop screaming about denial & waving a finger in my face.) Two months after the first attack of pancreatitis I had surgery for a tumor that had quadrupuled in size in 10 weeks, crushed my sciatic nerve, engulfed an ovary and a fallopian tube. Since then I’ve had everything from whooping cough to sudden drops in blood pressure caused by genticulous neuralgia to numerous blood clots, ruptured veins, and tissue damage from incorrect IV insertions and dye injected CT scans & MRIs to a potassium imbalance level of 1.9.

    A Virago is a woman of uncommon, unfeminine strength, NOT a roaring bitch. You are a hero to me, and I intend to send copies of this essay with the thank you notes to the few decent doctors who have treated me.

    Peace
    Virago

    Virago: I found myself overwhelmed reading your experience. I have treated my share of patients like you and know how lives are overtaken and ruined by experiences like yours. I am humbled and delighted you found even a small bit of comfort in reading my post. Though I said I wrote it mostly to myself (and I did) I also wrote it to people who’ve had experiences like yours.

    Alex

  • Andrea

    I mentioned bias against women, especially young women. I’m sure there is bias against people of color; I don’t know if being a woman or man of color makes a difference. (I am Caucasian). I also twice shared a hospital room with morbidly obese women and it was obvious she was treated differently. Once was at the Cleveland Clinic, where the staff didn’t hide their disdain and said terrible things to her. Both women were white. And then there’s the elderly. I remember taking my eighty year old mother to the E.R. because she thought she might be having a heart attack (she wasn’t). When she was asked the last time she was hospitalized she said thirty eight years ago for gallbladder surgery. On hearing this, a staff member came over and asked me if she had dementia. I said no, she was last hospitalized thirty eight years ago for gallbladder surgery. Eight years later when she had a stroke and was in her home town at the hospital she volunteered at, the staff said she was “confused.” When the neurologist came, she diagnosed her very quickly; it was a classic stroke. She recovered, but the delay hindered a complete recovery.

    Any bias that exists in our culture will spill over to the medical world at times. Sad, but inevitable.

  • Crystal

    Thanks for this excellent article. As a nurse I’ve seen patients struggle with difficulties in finding a diagnosis and had a personal experience with this.

    I was just turned 40 with minimal medical history and began experiencing 4+ pitting edema up to my thighs, with edema also in my upper extremities & face, BP creeping up, heart rate instantly shooting to around 200 with exercise (despite being fairly active) and fatigue. My PCP, an NP, found nothing to explain this with multiple lab tests, an ECHO & other tests, so sent me to an MD colleague for help. This person was obviously on the edge of burn-out, as without even looking at my legs told me I had to get used to the idea that as I age the valves in my leg veins won’t work as well as they did previously! My PCP agreed to start me on low-dose HCTZ to relieve symptoms until we could figure it out, and I lost 30 lb and the other symptoms in less than 2 weeks. Finally an endocrinologist was able to help us sort out an interesting combination of causes, but I’m still not thrilled with the idea that someone would have the gall to give an outrageous diagnosis without even making an examination—and to bill for this insult. Is there a way for clinics and hospitals to help MD’s recognize the symptoms of burn-out and encourage them to take some time off?

    I am grateful to have a PCP willing to dig & get to the bottom of strange symptoms.

    Crystal: You raise an interesting and excellent point. When patient’s lives are potentially at stake, who monitors doctors to make sure they’re not compromised in some critical way? We all have good days and bad days, but what about the surgeon who’s really too tired to operate? The internist who’s so depressed himself he can’t concentrate? As far as I can tell, the answer in most contexts is the physician him or herself. Don’t know what a better answer would be, but it seems like there must be one.

    Alex

  • I appreciate the insight you provide in this article. I am a cardiologist who belongs to a very large group (16 person cardiology group) and constantly find myself “running behind,” especially in my office appointments, though not so often in the hospital rounds setting. I am late because I spend time listening to patients and try to spend a fair amont of time explaining my thoughts concerning their illness and explaining the risks, benefits, and options to proposed testing or procedures. It remains of the upmost importance that patients understand and feel comfortable with my reccomendations. When the subject of a second opinion arises, I encourage patients to seek this route if they have persistent concerns I could not fully cover to their satisfaction. I seldom if ever have attributed a patient’s symptoms to “nerves/anxiety” until all other pathological etiologies have been explored. Even then I am more concerned about what what causes the patients anxiety than attributing a disease to anxiety.

    I have been a cardiologist for over 25 years doing both invasive and non-invasive procedures. During that time frame I have only a handful of patients who switched to another cardiologist because of my tardiness in the office. My patients understand if I’m “running late” they still will receive all the time they need when it is their turn to see me. I am late because I am listening and trying my best to understand their problems so we can get an answer.

    I have missed diagnosises as every other physcian has, but it was not because I was in a hurry or burned out. It is because I am human and not perfect…and my patients accept this. I only ever had one lawsuit against me and this was eventually dismissed in my favor.

    Your article offers suggestions to patients but also to the doctors who understand the importance of their position in our healthcare delivery system.

    David: Thanks for stopping by and for your excellent comments, which well reflect my own experience as a general internist.

    Alex

  • Randy Winchester

    Hi!

    I like your posts and blog, came upon it by chance. It is well written and very thought-provoking. I encourage you to continue to put your time and energy into it.

    Some of this post reminds me of the recent book by Groopman, “How Doctors Think.” As a teacher of Organic Chemistry I meet many future physicians and work to improve their problem solving techniques, which is distantly related to your post.

    Would you recommend any other texts on this subject for college teachers who work with premed students?

    Peace.

    Randy: Glad you found my blog and are enjoying it. I read Groopman’s book and found it excellent. I’d recommend two books that touch on this subject, both by Atul Gawande: “Better” and “Complications”—both excellent as well.

    Alex

  • Andrea

    Atul Gawande is a brilliant writer; read his articles in The New Yorker. You can find them online by googling his name. The one last June? “The Itch” is mind blowing.

  • John

    It’s because of the stupid *^%*ing psychiatrists and psychologists sticking their stupid (*&(ing heads in where they don’t belong—for example, check out this list (I starred the ones I could easily point to a multitude of examples where physiological abnormalities have been found in the medical literature that do not happen in “neurotic” people, and those are just the ones I’m familiar with):

    Irritable bowel syndrome*
    Chronic fatigue syndrome*
    Fibromyalgia*
    Multiple chemical sensitivity*
    Nonspecific chest pain
    Premenstrual disorder*
    Non-ulcer dyspepsia*
    Repetitive strain injury*
    Tension headache*
    Temporomandibular joint disorder*
    Atypical facial pain
    Hyperventilation syndrome
    Globus syndrome
    Sick building syndrome*
    Chronic pelvic pain
    Chronic whiplash syndrome
    Chronic Lyme disease*
    Silicone breast implant effects
    Candidiasis hypersensivity
    Food allergy*
    Gulf War syndrome*
    Mitral valve prolapse*
    Hypoglycemia*
    Chronic low back pain
    Dizziness
    Interstitial cystitis
    Tinnitus
    Pseudoseizures
    Insomnia
    Systemic yeast infection
    Total allergy syndrome

    http://www.psychiatrictimes.com/dsm-v/article/10168/1171223?pageNumber=1

    The recommendation for which, at least according to these douchebags, should be the following: “A routine examination is recommended at every visit to reassure the patient and to ensure that there are no physical abnormalities (remember that paranoid people may have real enemies). However, no new tests or consultations should be ordered unless there is a clear indication. Rather than reassuring patients, unwarranted consultations or tests may feed their belief that they have a serious physical illness.”

    However, if you look at the following presentations, one by German researchers and the other by American researchers, the above recommendation could very well be a disaster for the patients involved, the first presentation dealing with subacute viral infection of the heart, the prominent symptom being simply fatigue with no clear diagnostic tool short of a heart biopsy, which is then tested for various cardiotropic viruses, some of which (enteroviruses and adenoviruses) respond to interferon beta, with others such as HHV-6 responding to ganciclovir. Please note that basic labs come back normal, hence the need for biopsy (they wouldn’t biopsy if there was another way to tell).

    http://www.scivee.tv/node/6762

    The second presentation is about recent findings of subacute HHV-6A encephalitis, again only definitively diagnosed with spinal tap and subsequent viral testing on the spinal fluid, and again the main symptoms being fatigue, neurocognitive difficulties, etc. Again, basic labs come back normal with only extensive immunological profiles (NK cell function, CD ratios, etc) coming back abnormal.

    http://www.scivee.tv/node/7030

    So please doctors, you’re not being told the whole story. You have a bunch of psychiatrists and psychologists who refuse to acquaint themselves with the biomedical literature writing these stupid and dangerous essays which can and do have serious consequences for patients, yet go unchecked among the psychiatric establishment. You have to depend on yourselves with idiots like these putting out the shit they do (and getting published in mainstream journals no less!).

  • Karen

    “Wanting to be right more than wanting the patient to get better…”

    I’ve dealt with some of those, and now have been told that I will never return to work because they allowed me to deteriorate too far without proper treatment. When the wrong pills failed to work, they still wouldn’t give me the right pills (which I repeatedly asked for); they simply prescribed another brand of the same type of pill. Requested tests that would have proven their diagnosis wrong were never ordered. Everything was attributed to psychological reasons.

    Eventually, other doctors ordered x-rays to show a valid source of pain, and a blood test that was “off the charts” that explained other symptoms.

    The response of my first dorktor was “nothing you said made sense.” He’s right: nothing I said made sense IN THE CONTEXT OF WHAT HE WANTED TO DIAGNOSE. It made perfect sense in the context of what was actually wrong with me. But once he’d made up his mind, he was married to the psychiatric diagnosis, and anything I said that contradicted it was simply written off to me being confused about what my symptoms were, and not him being wrong about the diagnosis.

    When I finally got the right pills, I started to improve, but the specialist says I have permanent physical damage and disability because the problem wasn’t addressed quickly enough to prevent the damage.

    Doctors have to remember that this is not about their ego, it’s about the patient’s health.

    Karen: You sound unfortunately like the “textbook” case about which I wrote the post. I’m so sorry to hear there was such a delay in finding and treating your right diagnosis. The last line of your comment is especially key, I think, far too often than it should be. Thanks for stopping by and I hope you feel better soon!

    Alex

  • Andrea

    I have Crohn’s disease, interstitial cystitis and chronic fatigue syndrome. I needed emergency surgery for the Crohn’s; there was a pathology report, but I was still told by some docs it was a psychiatric disorder. Eventually I got sick of hearing this so I went to a psychiatrist who’s area is psychosomatic medicine. He told me it wasn’t. When I got interstitial cystitis symptoms and couldn’t get a doc who knew what it was I went back to the same shrink who told me I had a real disease and kept me going until through my own research, I got a diagnosis. Eventually an organization formed, and we got the psychiatric diagnosis out of the textbooks. I saw the psychiatrist today and mentioned a Dr. Barsky, a psychiatrist, who is still claiming fibromyalgia is a disease of hysterical women. The psychiatrist said: “I know him; he should leave the 19th century.” I also see a psychopharmacologist who’s my sleep specialist, and he believes EVERYTHING I tell him. The most interesting thing to me is that I saw twenty-seven docs when I was trying to get a diagnosis for interstitial cystitis; many told me I needed a psychiatrist. Not one called mine though and by then he was the chief of the service at one of our famous hospitals. Physiological abnormalities are definitely seen in Crohn’s and interstitial cystitis by the way. That didn’t matter. Ironically, I got a diagnosis of chronic fatigue syndrome from the first specialist I saw; by then I had worked with docs and knew who to call. My brother died of acute myeloblastic leukemia; the first docs he saw said it was anxiety. Nothing could have saved him in ’67, but it’s still scary.

  • Andrea

    Wendy, I had a situation very similar to yours. For fifteen years I was given magnesium sulfate by injection from a visiting nurse for fibromyalgia. Even though the fibromyalgia disappeared after a year I continued the injections. Then I lost my visiting nurse and figured I’d stop the injections. Four weeks later, my interstitial cystitis flared after fifteen years of being quiet; I was in terrible pain. Every doc I spoke to asked me what had changed and I said I stopped the mag sulfate. The obvious response was to start it again and see what happened. But I had a new-ish primary who refused because “it didn’t make sense to her.” The prescribing doc was an hour away. So I carried my mag sulfate around to any doc I had who’d give me the shot. Six specialists faxed my PCP. I kept calling and getting no answer. I made an appointment to discuss it and got no decision. I felt like the wandering Jew carrying the mag sulfate around to any doc who’d give it to me. I found journal articles showing it is used in Europe for pelvic spasms, which I had. Didn’t matter to this PCP. Finally my gastroenterologist sent me to a PCP who immediately gave me the shot. She’s a mile from my house. But I honestly thought I’d lose my mind. I told her it could be placebo effect or coincidence but could we still try it. Last summer was a nightmare but I kept going.

  • Camy

    Very intriguing assessment that I’ve seen all physicians express at one point or another. Especially with my mother’s dermatologist, who refused to even look closely at the rashes on her neck. He kept his distance during the entire visit. My mother gave him a list of cream that he used and all he said was, “Never heard of it.” While I won’t blame him for not hearing the names of those creams, he was completely insensitive and by the end of the visit offered only two things: an allergy test and continued prescription of an generic allergy cream. That’s something even someone without an M.D can do. My image of a physician was literally shattered by his attitude.

    Nonetheless, as an aspiring physician, having this list gave me an insight on some of the many thoughts that a physician should consider at any point during of a diagnosis.

    Thank you.

  • Rachel Q

    I’m another veterinarian who greatly appreciates this article. It’s wonderful. I can recognize a few of your biases in myself.

    I cringed when I read your advice to “position your symptoms and requests carefully” because I think patients and clients shouldn’t have to be careful—but it’s excellent advice. I would add one thing: ask your questions without mentioning the internet. I think the word itself gets a negative reaction. The internet has a lot of bad information, and I think many doctors perceive it as a challenge to their authority.

    In veterinary medicine the client is paying the bill the great majority of the time, so if a client wants a test and it’s not painful or harmful to the patient, we can usually do it. I’ve had a few cases when I’ve told the client that I don’t recommend a test and they’ve asked me to do it anyway. If nothing else, getting back a negative result helps us move on, and listening to the client’s concerns helps build a working relationship. I’m always a little leery when I read about physicians NOT running tests specifically requested by a patient. Even if the physician is right the patient may feel disrespected—and the physician who’s wrong has messed up both the relationship and the medicine.

    Veterinary medicine suffers a common bias our physician counterparts don’t have, which is to assume financial limitations on diagnostics and treatment that may or may not exist. The opposite also happens—we assume there will be no financial limitation and then realize that we’ve already run done things we would have given lower priority if we had we known the budget. If you have a sick animal, I’d advise you to give the vet some idea of the budget up front.

    Rachel: Great advice for pet owners and patients alike. You may very well be right about the internet. I don’t have that particular bias but I’d bet many providers do. And your point about the financial issues being different for animal owners seems spot on.

    It’s a tricky thing when a doctor doesn’t want to run a test a patient requests. We have a saying in medicine: “Don’t look under a rock unless you want to get bit by a snake.” In other words, if the clinical picture doesn’t come near to suggesting a particular disease is present, don’t run tests to rule it out because you may find a false positive that leads to more invasive testing that leads to complications that even can lead to death (I’ve watched this happen more than once). Many patients have a hard time understanding how simply ordering a test can lead to harm, but it surely can as once you have the information the test provides, it’s hard to ignore it and ignoring may actually be the right thing. I’d imagine a similar situation might exist for vets, no?

    Alex

  • Rachel Q

    Alex—yes, false positives are a problem for everyone, and I should have qualified my comment better when speaking about client—or patient—requested tests. You wrote about a tendency to ignore or dismiss symptoms—my real point is not that any test should be run on request, but that some diagnostic plan should be developed when a client or patient has a serious concern.

    Having said that, there are some tests I don’t understand a refusal to run—biopsy of skin masses, for instance.

    Rachel: Thanks for the clarification. I completely agree.

    Alex

  • Debi

    Thanks for this wonderful article.

    I became so frustrated that I found myself doing a search “when doctors don’t know what’s wrong.”

    It is really terrible to feel sick but it is a nightmare to feel sick and have people look at you like you’re crazy.

    My boyfriend is a psychiatrist. He tells me that he thinks that many of his patients are people who have a physical illness (not psychological) but no one can figure out what it is.

    Debi: I agree with your boyfriend’s sentiment. I think that happens a lot more than many doctors acknowledge. Please don’t give up searching. Sometimes it just takes the right doctor with the right experience to figure out what’s really going on.

    Alex

  • Barb

    This post was very educational; likewise, many of the comments. I appreciate Rachel bringing up “diagnosis by internet.” This has happened to me with a vet when we took in one of our dogs for emergency treatment. The veterinary emergency clinic folks did seem a little put off when I offered my armchair diagnosis, courtesy of some intense web-surfing. However, I DID correctly figure out what the dog’s ailment was. If I hadn’t done the research we would have waited until our regular practice opened on Monday (of course, per normal at our house this vet emergency occurred on a weekend)! The online info on the condition (pyometra) indicated it was potentially life-threatening and immediate veterinary attention needed to be sought.

    This doesn’t really fit into the “when doctors don’t know what’s wrong” category, but let me propose another suggestion for improving doctor/patient relations: don’t minimize or “pooh pooh” to patients the effects/impact of treatments or procedures. Doctors tend to see the same problems over and over again and many appear, to them, to be fairly routine and minor. However, to the patient a treatment or procedure may be an entirely new experience and something to be feared, or at least not treated cavalierly.

    My example was dental—many years ago a dentist proposed extracting my four wisdom teeth. There was nothing wrong with them except they were hard for him, and me, to keep clean. I’d had other dentists comment on how fortunate I was to have wisdom teeth emerge perfectly straight, no problems, etc. I expressed reservations, and he said, “Oh, it’s no big deal; just like having any other tooth pulled.” Well, he could look in my mouth and see I had no fillings or pulled teeth. To him, someone who extracts teeth every day, it was a walk in the park; to me, a person with, at the time, a blessedly uneventful dental history who knew from others there is some pain and potentially several days of suffering from having four teeth removed simultaneously, it was hardly a no-brainer to say, “Sure, pull away.” BTW, many years later I still have these teeth, and all the others!

    Barb: I could not agree more with your point about how cavalier doctors can be when recommending treatments or procedures. And you have the cause exactly right. I add even one more thing: doctors should always tell patients what to expect, even if the procedure or treatment will be painful. When you expect little to no pain but then experience some, your first thought is that something must be wrong, which dramatically worsens the experience of pain and induces totally unnecessary worry. Thanks for stopping by and for your comment.

    Alex

  • Ingrid

    Alex, thank you for all your excellent articles, but especially for this one. You are spot on. I recently retired as a Pediatric NP (after 35 years of practice), and was aware of many of these points over the years. The key is always to listen to the patient, really listen, and think about what they tell you. And dealing with children, you have to listen to the parents, and interpret non-verbal information from your patients. With our modern healthcare system in this country, this has become harder to do well, when economic pressure is to see more patients in less time. I actually retired earlier than I wanted to because of this; my physician employer decided that he wouldn’t pay the NPs past 5 pm, so if I was running behind because I had taken the time to listen well, be thorough, follow up on things, including call-backs to patients (and document well with an EMR), I was spending a lot of my own time on my own dime to do this, and I finally decided this wasn’t fair, and left. I’ve changed careers, become an EMT, and am Service Chief for a local volunteer ambulance instead. So, kudos to you for your excellent articles, and I salute your continued practice—I’m sure your patients appreciate you very much.

    Ingrid: Thanks so much for your kind words. Unfortunately, I think stories like yours are all too common. Surveys of primary care doctors suggest an all-time high level of dissatisfaction with their jobs hovering around 40-45%. It makes total sense that physician extenders would experience a similar level of dissatisfaction and be affected by the dissatisfaction of their physician partners.

    Alex

  • christine

    Good advice for dealing with many professions…lawyers, and teachers come to mind!!!

    Christine: Good point. Anyone in any service industry…

    Alex

  • Heather

    As a psychiatrist, I will never forget a patient I saw in my first year of practice. She was a middle-aged woman seen for depression, anxiety, and weakness. She was certain something was wrong that was causing the weakness—however there were so many conflicting reports that her symptoms were hard to sort out. Sometimes she’d come in with a cane or wheelchair; other times she walked normally. The symptoms seemed to vary to some degree with her stress level. The big piece of evidence pointing to a more psychological cause seemed to come when her primary care physician saw her running after a bus, something that my patient claimed to not be able to do.

    Six months later, a brain MRI revealed the characteristic lesions of multiple sclerosis. She had this in a remitting-relapse pattern, which in retrospect expained her varying degrees of symptoms and wellness—and stress sensitivity. While I continue to see persons whose severe brain illnesses (psychiatric problems) affect the rest of the wiring of their body (GI, pain, other symptoms), I try to remember this person, and always encourage follow-up of their symptoms with appropriate PCP or specialists. Thank you, Alex, and those who have shared their stories here, for helping me keep this firmly in mind.

    Heather: That’s a really compelling story. Good for me to keep in mind as an internist, too.

    Alex

  • Crohn's Disease

    I’m very afraid about Crohn’s disease. I have some symptoms of abdominal pain, often in the lower right area, and diarrhea. Should I go to see the doctor? Please help.

    Crohn’s Disease: Yes, you should absolutely go see your doctor immediately.

    Alex

  • Judith Wilson

    Read your article with great interest. The info about medical reasoning was especially enlightening for me. My relapsing remitting MS was finally diagnosed seven years ago after over 30 years of symptoms. I know this isn’t unusual for RRMS patients my age, partly because of the difficulty of diagnosing MS and partly because of the tremendous advances in medical technology and treatment in recent decades. However, several aspects of my experience seem to relate to the doctor-patient problems you describe. #1—When I experienced my initial symptoms (dizziness on hot, humid summer days in NYC to which I was unused as a California native), I dismissed them as trivial and probably a recurrence of sinus-related problems I’d had as a child. And, because I was a college student struggling to support myself and forced to rely on ERs during the summer or the college infirmary during the school year, I didn’t report them to a doctor. #2—A year later in 1973, when I returned from a semester at a West African university where I’d contracted malaria three times (I didn’t know about anti-malaria pills until I was dragged to the university hospital by some African students who were aghast at my ignorance), I got a checkup. When I mentioned that my dizzy spells had been so intense while in Ghana that I fell down every morning when I tried to get out of bed, the MD referred me to a neurologist. The neurologist showed little interest in my dizzy spells and the fact that they only occurred in extreme heat—a classic MS symptom, I now know. Instead, he focused on my left eyelid, which has always drooped when I get tired, with friends reporting that the eye sometimes wandered. This led him to a xx of “latent myasthenia gravis,” for which he explained there was no cure and no treatment, but only a 50:50 chance that my disease would ever shift from latent to active. He then advised me to see a neurologist once a year for a checkup. As my mother and I left his office I remember thinking, “If there’s no treatment and no cure, then annual visits to a neurologist won’t be preventive. So why bother worrying about this once a year? If my symptoms get worse, I’ll see a neurologist. If not, I won’t.” And, since my left eye remained unchanged for the next couple of decades I thought I was OK in spite of increasing bouts of heat-induced dizziness, crippling fatigue, and muscle weakness. #3—In 1997, I saw a second neurologist after a friend mentioned that Raynaud’s (with which I’d been diagnosed a few years earlier when I lived in Virginia, but for which I could not get an Rx from the doctor to whom I’d been assigned by the health service of the New England university where I was currently employed) is often associated with MG. This neurologist told me I definitely didn’t have MG and recommended that I finally be allowed medication for Raynaud’s. Like the first neurologist, however, he had no interest in my dizzy spells. Nor was he interested in my increasing difficulties with fatigue. #4—The neurologist who dx’d my MS in 2002 (by then I had plenty of brain lesions and she also got positive results from a spinal tap and evoked potentials) was outraged when she heard about my 1973 experience. I’ve since read that doctors who suspected MS back then sometimes intentionally misinformed patients because the dx was so hopeless. But since the MG dx I got was equally hopeless, this isn’t a logical explanation for the misdiagnosis. Instead, I’m inclined to guess that the doctor (who looked young) knew more about MG than he did about MS and simply “recognized” the symptoms with which he was most familiar. As for the 1997 experience, I write that off to the vagaries of university health services (I’m told they tend to employ the least talented med school grads—the ones who aren’t good enough to get hospital jobs or go into private practice). Because of these and other unpleasant experiences (evidence of a case of PID that went undiagnosed in the early 1970s by 6 gynecologists during a 3-year period of excruciating pain, hemorrhaging and externally visible ovarian inflammation, only to be “discovered” during a hysterectomy in 2000), I am today a conscientious, but skeptical patient, who gets regular checkups and doesn’t hesitate to report new symptoms, tries to stay well-informed, asks lots of questions, sticks with my meds, watches my weight, eats healthy, exercises, and is extremely grateful to the doctors, nurses and other medical staff who “get it right” in a health care system that seems designed to ensure mistakes. Thanks for your excellent article!

    Judith: What a story. Thank you so much for sharing it.

    Alex

  • Alex: You wrote a very thoughtful and caring article that deserves wide readership. I’ve thought a lot about this topic in the course of writing my book, “The Life You Save: Nine Steps to Finding the Best Medical Care—and Avoiding the Worst.” (Read Chapter One at http://lifeyousave.com/excerpt.html). To your excellent tips, I would add a few:

    1. Make sure the doctor is board-certified, ideally in one of the core “diagnostic” fields: internal medicine or family practice. Don’t make the mistake of thinking you can skip over the generalist and go straight to the specialist. A top primary care doctor is vital.

    2. Vote with your feet and go somewhere else if the doctor doesn’t have good listening skills and empathy, both of which are important to an accurate diagnosis.

    3. Help your doctor get an accurate history from you by pre-interviewing yourself and writing down your key concerns and a summary of symptoms, prior treatment, etc. (this should be one or two sheets, not a book.) Then hand that list to the doctor to help them focus and ask good follow-up questions. Also bring with you the results of any relevant lab tests, imaging, etc. (Getting and reading your own medical records is actually Step One of my Nine-Step system.)

    4. The real disasters I’ve seen in my work as a malpractice lawyer are when the doctor assumes you have something benign and leaves undiagnosed a serious, treatable issue until it’s too late. Trust your instincts if you have a terrible feeling about your body’s signals, and ask the doctor “what else could it be” to try to prod some “differential diagnosis” thinking by the doctor.

    5. Consider trading up to a higher level of expertise. Ask the doctor gently, “If I were a member of your family, whom might you recommend I see about this?”

    Patrick: Excellent suggestions all. And your first chapter was terrific! I look forward to reading the entire book.

    Alex

  • Laurie Cohen

    As I have been saying to doctors for 25 years, my chronic fatigue and fibromyalgia are virus-related and my body’s weakness is the constant poisonings I endured growing up in Miami; the truck foggings of my neighborhood for mosquitoes and the fact that I played in piles of pure DDT as a young child (put out to kill ants).

    Imagine my heart when the latest news says the same thing I’ve been telling anyone who will listen: “Virus suspected as cause of chronic fatigue syndrome.” It’s called XMRV.

    There may be hope for me and other patients who for years have had to endure smirks, ignorance, referrals to psychiatrists and disbelief at the myriad of symptoms this disease has.

    Further, the CDC DIVERTED funds for research into this disease years ago. So, why the findings now? In my estimate it is only because it looks like enough money can be made on a cure and tests show that MEN have the virus in their prostates when diagnosed with cancer.

    Oh, us lucky one million sufferers, some, like me, for 25 PLUS years.

  • Sarah A.

    I’m a new visitor to your blog and found this post illuminating. The catastrophic misdiagnosis of my fibromyalgia garnered in the early 1980s, before a correct diagnosis was possible, left me with PTSD and difficulty seeing doctors as human. Fortunately, friends I knew before they got MDs have been very patient and helpful with my efforts to get past that history. Thank you for giving me something to work with.

    Sarah: I’m so glad you found it helpful. When you’re the victim of a misdiagnosis it’s extremely difficult to trust health care providers again. Perhaps my most recent post on forgiveness might provide some additional insight?

    Alex

  • Alex,

    Thank you for such a refreshing, outstanding posting!! And thank you for reaching out to people of the non-medical-language persuasion. I can tell you really do care about your patients.

    I am a breast cancer survivor, and my doctors are outstanding, but I also have been my own self advocate. I hope you have time to check out my blog, which is designed to help others navigate the medical system; it’s called Calling the Shots at http://www.bethlgainer.blogspot.com.

    Thanks much for an informative posting!!

    – Beth

    Beth: I’m glad you enjoyed the post. Your blog looks fantastic. A great resource for breast cancer patients and others.

    Alex

  • Jennifer Murphy

    Dear Dr.-

    After over ten years making the rounds to any MD who would take my insurance, I was finally (and, I think, correctly) diagnosed with RSD, now called CRPS (Complex Regional Pain Syndrome.) I kept being told that I had fibromyalgia, but that didn’t make sense to me. I didn’t have all-over muscular pain, I had constant and debilitating pain in very specific joints (left leg/knee and left SI joint.) I’ve taken every kind of med known to man—tri-cyclic anti-depressants, muscle relaxers (why, I don’t know,) the new ones like Lyrica, Cymbalta and Pristiq and the old ones like Neurontin and Topamax (which made my brain fog up). I’ve also taken every narcotic known to man. If you look at my prescription history, it reads like Rush Limbaugh’s medicine chest.

    After diagnosing me with RSD, the doctor would no longer have anything to do with me. He sent me to Rush U (Chicago) Pain Center. I was really excited, because I looked them up on their website and they were said to specialize in RSD. My husband took a day off, we arranged for our kids to be met at the bus stop and bundled up our 6-month-old twins and took them with us. It took us all day, but I got my answer: They couldn’t do anything for me, because it had progressed too far and had started to cause bone and tissue damage.

    Even so, I then tried nerve blocks, chiropractic manipulation, biofeedback, acupuncture, witch doctors (just seeing if you are still paying attention), physical therapy, ultrasound therapy, etc. NSAIDS. Celebrex, Vioxx, Bextra (why all of the x’s in arthritis meds?).

    I still go to a doctor once in a while to see whether or not they will be able to help, but my big problem is that they always, always always ALWAYS think I am a drug seeker. I am NOT. I am female, white, and 35. I am neat, clean, have all of my teeth and have clean clothes. I am married with four children. All I want is some relief and an answer. At this point, I’d even rather hear “you will suffer for the rest of your life” rather than the standard “there’s just a lot we don’t know about nerves. But it should pass. Are you stressed out or depressed?” YES! From being in PAIN for what I’m told is no organic reason at all!

    Sorry, didn’t mean to turn this into a rant…ut if RSD is the problem, what is the solution? And how do I go to a doctor and convince them that I’m not an addict?

    Frustrated to infinity.

    Jennifer: First, if you’ve been correctly diagnosed with RSD (and it sounds like that could be right based on the information you’ve provided) I’m surprised and dismayed to hear doctors are still viewing you as drug-seeking rather than pain-relief seeking and saying there’s no organic reason for your pain. The reason for the pain in RSD is a malfunction of autonomic nerves and is quite real. The only suggestions I have for you to explore with a compassionate and experienced doc (no sarcasm, please) are the following (if you haven’t already): 1) alendronate (used to treat osteoporosis, some studies have shown it helps with RSD pain), 2) nasal calcitonin (300-400 IU/day, 3) topical capsaicin cream, 4) terazosin, 5) TENS unit.

    Stage 3 RSD really is a difficult problem to treat. I find whenever the literature makes frequent suggestions for therapy and support groups what that really means is we have no effective treatments, not that the cause is psychological. Don’t give up! Look for pain clinics that are genuinely interested in treating this disease. They may be few and far between but they must exist.

    Alex

  • Jennifer Murphy

    Thanks so very much. Even after going to different docs for over ten years, other than the TENS unit and the topical cream, I have NEVER heard of, or had suggested to me, the first two. Thanks again!! There IS hope!

    J.

    Jennifer: Best of luck to you.

    Alex

  • Erica Doyon

    Daughter has RSD 4 years now. Having fainting spells, tiredness. Had testing done for POTS. All negative. Now suggested she is psychosomatic. Is there a connection between all of this?

    Erica: I don’t know what POTS is so I can’t comment there. RSD is definitely not a psychosomatic illness. Fainting spells themselves can cause fatigue for 24 hours following an episode, but I’m afraid you’ve not given me enough information to make even an informed guess about what might be going on with your daughter.

    Alex

  • Tiffany

    Alex,
    Thanks for posting this. I have been dealing with many symptoms for years. The worst being within the last 6 or 7 months. This post is very helpful. I’ve dealt with many doctors who don’t seem to have a clue as to what is wrong with me. I found 1 nurse practitioner who was finally listening and offered many suggestions as to what could be wrong. Unfortunately I ended up leaving the area for work relocation and could no longer go to that doctor’s office so I had to find a new one. I’ve been to this one for 2 years with different issues and no answers. I’ve had MANY tests done to figure out why I’m having all these issues.

    I used to be very healthy until about 7 years ago when my thyroid started giving me problems. Ended up having a partial thyroidectomy due to a golf ball sized goiter. Didn’t need medication for it though since the other half supplied enough hormones.

    After that I was healthy for a few years until I ended up getting mono, which made me extremely ill for about a year. After that started all the other issues. Extreme fatigue, swollen lymph nodes (occurs without being sick lasting weeks), enlarged thyroid (the side I have left). I had an ultrasound done 2 years ago and was told I had 10 nodules on my thyroid and that there is something in my lymph node on my neck that “seems to be benign.” The nurse practitioner mentioned being tested for a possible auto-immune condition but was waiting for a month to see what happened first. This is when I moved.

    I’ve suffered from SEVERE sore throats so bad I can barely swallow tea, but was told over and over that it was nothing they could find. And when I demanded something they gave me amoxicillin and hoped it would work…which it did within the hour that I took it…yet I was told it was just a coincidence and to stop taking it…which I didn’t do…I mean it was the only thing that helped me after 2 weeks of such severe pain.

    What I’ve been dealing with in the last 6 or 7 months started as severe vertigo. Started all of a sudden and lasted for about a week. Since then I’ve been dealing with relapses of vertigo weekly along with severe migraines always on the same side and behind my eye, tinnitus, nystagmus (which only happens when I shut my eyes…weird). I also have dealt with memory loss, confusion, weakness, muscle spasms, lightheadedness, and my head just doesn’t feel right at all. I can’t move my head even at a normal speed without feeling like I’m flickering in and out of consciousness. All I’ve been told was that it’s probably migraine associated vertigo and they gave me nortriptyline to keep the migraines from coming, which doesn’t work and actually gives me more headaches…yet they keep switching my doses instead of taking me off.

    Sorry that was so long. I think I am going to take your advice and try yet another doctor because the pain is definitely not “in my head”…well I guess it is in my head haha but I mean I’m not just making it up, and I’m not depressed or anxious about anything as they’ve asked. Although I guess it didn’t help that I lost control of my emotions while talking to the nurse practitioner which I’m sure led her to believe it was because I was depressed…but come on….6 months of being in pain and “dizzy,” etc. definitely gets to a person.

    Anyway, thanks for the post and sorry this was so long!
    Tiffany

    Tiffany: Sounds like you are really going through hard times. As I wrote about in another post, The Danger Of Having Unrealistic Expectations, often not knowing what’s going on is worse than knowing something bad is going on, as at least then you can start to deal with the truth and move foreward. I hope you find someone who’s able to help you soon.

    Alex

  • ALEX…love your blog and posts on KEVIN MD…I always try to tell a patient what they have, how they “got” it and how to treat/manage the problem…if I do not know…I tell them…but share my thinking processes with them and tell the patient what the do NOT have…it has worked well for me for 25 years…and I agree about “difficult” cases as a learning tool…I remember in blazing color all of my “mistakes.”

    Doctor Sabelotodo: Me, too. Glad you like the blog.

    Alex

  • davey

    Hi. I was wondering about the information regarding health matters on the Internet. I’ve been unwell for 15 months with obvious swelling in my throat and mouth and quite a few swollen lymph nodes in my body which were apparently not that big when i had a CT scan. Every time I mention anything I’ve seen on the Internet as possibilities, every doc I’ve seen frowns and says most of the info on the Internet is rubbish. I take a common sense approach when viewing these pages and think many illnesses can have similar symptoms; also I think if i read the information and it is the same on not one but a few websites then the actual info must be correct; why do GPs and specialists, etc. dismiss the information on the Internet? I don’t think people would knowingly put false information on these sites—not when it is involving health issues and thanks.

    Davey: Unfortunately, many Internet web sites do contain misinformation. There is a tendency we all have to believe things we read. Always reasonable to maintain a healthy degree of skepticism, especially about information found on the Internet, a portal to which so many have easy access.

    Alex

  • davey

    Here’s something quite interesting to read; all my doctors have been like some of the reasons to get a new doctor http://thyroid.about.com/cs/doctors/a/neednewdoctor.htm

  • davey

    Yes, I agree with you there, Alex. I’d think some of it false information and some of it correct so unless i know for sure I’d compare a few sites; if they all read the same I’m more inclined to believe what I’m reading. I wouldn’t instantly believe any web page; it’s certainly a cruel thing to do, sharing false information especially regarding health matters but I’ve no doubt it still happens.

  • davey

    Tiffany, I have many of your symptoms+ I have severe chest pain too and shortness of breath. I have swollen lymph nodes in different parts of my body and was fit too until this started 15 months ago. I used to weight train 5 days a week and do 400 sit ups every day. Now I can barely walk down the street and still I’m undiagnosed. I had a needle biopsy on one of the big nodes in my neck which was inconclusive. I know exactly how you feel. Have you been getting worse as I have over time? Hopefully you’ll get better soon. Anyway, good luck.

  • davey

    I wonder if you could clarify for me, Alex, please: is it true that fine needle aspirations can be inaccurate? Due to not collecting enough cells hence them often coming back inconclusive? I’m quite worried about the possibility of cancer; my mum died of it, and I have had lumps appear in my mouth that have been there for around 8 months; I still have no explanation for this. The lumps have stayed around the same size but I keep getting sores and my mouth looks very red and is a little sore; it also recently feels kind of rubbery inside. I’m guessing that is due to the swelling. Thanks, any advice would be greatly appreciated.

    Davey: You can have what’s called a “sampling error” where the needle happens to land in the midst of healthy tissue, but that more applies to large tumors than it does to lymph nodes, where fine needle aspiration usually finds an answer if the answer is cancer.

    Alex

  • davey

    Hi, Alex, thanks for clearing that up for me. I think I see one main reason I am not getting the treatment I should be getting; after getting my medical records for the past 12 months, I’ve seen a certain GP specifically has put hypochondriacal—consistant approach needed; can you clarify what would this mean to a GP, and will every GP that looks on the system immediately see this and dismiss anything I say?

    Davey: “Hypochondriacal” means someone who is abnormally anxious about their health. The implication is that nothing is really wrong but that the patient worries constantly that there is. It is a real disorder. It is, however, quite hard sometimes to sort out if a patient’s worry is unwarranted or not. Frequently, as I wrote in this post, doctors ignore or incorrectly explain a patient’s symptoms and incorrectly label them as “overly anxious” or “hypochondriacal.” I have no way to tell if that is the case for you or not. What you really need is a compassionate, patient physician who can take the time to take all your complaints seriously and to explain his or her thinking to you about all of them. Sometimes the real problem is an underlying, unrecognized anxiety disorder that is eminently treatable. Good luck!

    Alex

  • davey

    Thanks, Alex. Sorry for all the questions and I much appreciate your answers. I have 2 specialists to see this week—well one appointment at the Breakspeare hospital to have much better testing done—and I’m seeing a specialist in general medicine also, so hopefully I should get from that a diagnosis. Obviously I am worried because of my health deteriorating which I tried to explain to my then-GP, and I have panicked about this ongoing problem after never being ill for this long or ever actually feeling this ill I’m bound to be concerned. I think she just didn’t have any answers and so like you mentioned before, just kind of ignored me and then must have thought I am a hypochondriac. I actually found that quite insulting and upsetting considering she had the results from the ENT specialists clearly stating I did have swollen lymph nodes, and my throat is always red raw. She even noticed the swelling in my throat yet still decided I’m a hypochondriac LOL. I’m very concerned that the GPs I have seen are unfit to do there jobs properly, clearly ignoring someone, then labeling them with psychiatric issues when there are obvious physical symptoms is unacceptable and I have put in complaints. I hope no one has to go through this the way I’ve had to. There’s nothing worse than knowing you’re really ill and getting no help whatsoever. I think it will help in some way a bit of extra insight here for you as a GP to see how patients feel etc. sort of on the other side of the fence view LOL. Thanks for your replies and help.

  • Ashley

    I have been sick off and on for the past 11 years. I hit my head when I was 11 and am now 22. Ever since then I have been sensitive to everything: touch, smell, sight. I have times where I feel great and times that I am sick. I don’t know if it is physical or emotional. Or both. But I think I could deal with things if I found a doctor that I actually felt like they cared. I don’t feel that some listen to me and push me aside. I’m such a caring person I’m actually going to school for nursing because I want to HELP people even if its being there for them emotionally. If I could find a doctor that at least can make me feel comfortable when it’s physical or emotional it would make me probably feel that much better than going to a doctor that seems to not give a s***.

  • davey

    Hi, Ashley. I know exactly how you feel. I’ve seen the docs and specialists I’ve been to all watch me slowly getting very sick. I ended up having to go to the a and e because my bowels are no longer working; they are going to do an ultrasound; I was in agony with my stomach and my chest; I also have severe pain under my right arm in my shoulder my throat feels severely swollen inside and I’ve just recently seen an ENT specialist I’d seen previously that still seemed unconcerned after 2 years of my being like this and now I can hardly walk around without feeling really drained. It’s just atrocious, this “just leave it and see what happens.” No wonder people die because the GPs and specialists will not take people seriously; and you’re right, it seems as if they just don’t care. The big problem is no doctor or specialist would be in any kind of trouble for having this attitude and in my opinion they damn well should have to account for their decisions on patients; I bet there would be a much different attitude then. This cannot be allowed to continue the level of care is unacceptable. I wonder sometimes if there’s any point in going to my GP at all. Patients need to have a say and be heard. I’m disgusted with it and so ill yet it’s like they turn a blind eye—totally unacceptable. Keep at them, Ashley. Don’t be beaten. That’s what they want—you to just go away and make their lives easier. Good luck.

    Davey

  • Elaine

    Re: Erica’s post…POTS is Postural Orthostatic Tachycardia Syndrome. I also have this and it took dealing with one very condescending cardiologist and a second opinion by my now great new cardiologist to get it diagnosed. Thanks for your wonderful article.

    Elaine

  • Jennifer Hunt

    This is my first time reading your website and it couldn’t have come at a more perfect time. I have been diagnosed with Lupus and fibromyalgia a year and half ago. However, the past few months, I have been having acute debilitating pain at the lower rib cage level that so far testing in the ER and follow-up with my primary have yet to uncover a reason.

    This week, I have to call him again because the pain has spread, but this article encourages me on how to talk to the doctor, and understand from his point of view.

    I will share this with my lupus support group; excellent article!

  • Natasha

    Dear Alex,

    I happened to stumble over your fantastic and profoundly insightful article by mere coincidence, and I must say, I´m so glad I did indeed!

    I then was eager to read the other posts but didn’t manage to read all of them due to my several chronic illnesses which make me feel tired and weary all too fast. My first symptoms surfaced at an age where I still consider myself to have been quite innocent, saying this, because in the following years I repeatedly got to hear my diseases were all in my head, my fault, and/or existent because I am a rheumatic personality(?)—whatever that´s supposed to be…

    I don’t have difficulty coping with life or my illnesses. I just hate being confronted with numerous hilarious, unsuitable and ungrounded allegations, which I then have to address and emotionally process: THAT is going on ever since my childhood.

    I have a clear-cut diagnosed systemic lupus erythematosus, Graves’ Disease, antiphospholipid syndrome, celiac disease and a factor V Leiden mutation (at least that´s what they call it here in Germany). I’m a female American living in Germany and most of my experiences with so called “caregivers” are horrendous. I don´t trust most doctors, psychiatrists, psychologists, social workers, etc. any more.

    That led some of these “helpers” to classify me of having a borderline personality disorder, for example, just because I approached them with a reasonable amount of distrust before and after my diagnoses were finally verified.

    Natasha: I’m so glad you found my post helpful.

    Alex

  • CLS

    Very interesting post…I’ve had medical problems all my life since I was a kid with bowel issues that lead up to having problems with urination…seen many doctors…last one’s prescription was go to the restroom when I need to…MMMM glad I payed him all that cash…after 25 years of dealing with the problems and doctors telling me stupid shit like I’m lactose intolerant and crap I’m just about to give up…you’d think if a doctor wouldn’t know what’s wrong they would do everything to figure it out or seek others that might know instead of giving a retarded diagnosis…last I was told is O have a large bubble shape on my lower intestines…I went to a urologist and spent countless thousands and his diagnosis ended before it even started…in my line of work if you did something and it didn’t work then you would work on the issue till it resolved…too bad doctors aren’t the same way…

  • Beth Ranger

    In my experience doctors rather than admit they haven’t a clue would rather tell you that it could be something with similar symptoms. I have been to two doctors at the same surgery with the same complaint, only for the second one to question why I was taking the medication the first one had prescribed as if that were my fault. Dumbfounded!

  • Jose Perez

    Word: appalling.

    While this article is very interesting and enlightening, I can’t help but to be appalled and quite shocked. Let me explain:

    I am currently in a situation in which I am in dire need of help. During the last 6 months, life has been unbearable due to a multitude of different “depression-like” conditions which hit me all of a sudden and which slowly progressed, as well physical ailments. Some have been lurking about I am aware of, but one day last fall it got overwhelming to the point that I haven’t been able to work a single day since. Even simple tasks that I know perfectly well how to do became a major hurdle and take me hours to complete when they should take me a few minutes at most.

    On the emotional side it was a mix of overwhelming intensity, deep sorrow, racing thoughts and confusion, agoraphobia which is still present (though I think it has diminished some). But the anxiety pretty much vanished after I checked myself in a hospital—which was a total fiasco and a very traumatic experience—and gave way to anger. The sadness persists, the anger comes and goes, but the racing thoughts and confusion persist, as well as a very short attention span. It took me a very long time to read the complete article, as it will take me a long time to write this reply.

    On the physical side, I had “black-out” episodes during which I often lost hours; once I lost around 14 hours “if” I calculated right. Zero short term memory. In fact tomorrow I probably won’t remember having replied here unless I am reminded of it somehow; pressure in the head—NOT headaches, just pressure—which originally was behind the eyes, but now is mainly in the cortex; tinnitus that I began noticing in January in the form of high pitched whistle in perfect stereo and very loud, though lately the left ear seems a little louder than the right and which drives me insane at times to the point of holding my head and screaming out loud almost every day, a few times a day; extreme sensitivity to lights and sounds; circulatory problems mostly in my legs though I feel it in my hands at times but can shake it off pretty quick, and more which I am not sure in which category they fit, mostly insomnia, loss of appetite.

    To sum it up, I used to be a brilliant person, with uncanny technical troubleshooting skills, but I am now incapable of making a living with my skills as I lack the capacity to think and analyze in a timely fashion and/or for more than a few minutes at a time, on a good day. Did I mention short term memory loss? Not good when taking care of a park of computers in time-critical situations.

    The health care system being what it is in Canada and having never seen a doctor all of my life except as a child, I don’t have a doctor nor will any public sector doctor agree to see me, even if just for a visit, except maybe though one of the few overcrowded walk-in clinics which means endless hours of waiting and just the thought of it makes me want to curl up in a little ball deep in a closet.

    I decided at some point to check myself in at the hospital to get a full health exam for starters but it turned into a major anxiety crisis, after 20 hours of waiting and being treated by the hospital staff as if I was a nuisance as they are overworked, I ended up being sent to emergency psychiatry due to my metal state (uncontrollable crying and massive anxiety) and was confronted with a BAD psychiatrist who, as soon as I told him I had racing thoughts demanded that I tell them what they are and categorically refused to accept the fact that I had no idea at all, couldn’t name one if my life depended on it. Still can’t; it’s at another level of consciousness; it’s just “noise,” racing.

    I then decided to go see a doctor in a private practice, but this time prepared myself to avoid the same ordeal, and wrote down on paper a list of my symptoms and they way in which they progressed. That episode was a fiasco as well, and this is how my story relates to your article (sorry it took me so long to get to it; I think I might be venting some in this reply).

    I see myself and that doctor (which I found was biased on the day I visited her) in that article. Myself as having tried to self-diagnose for months and try to educate myself and learn about what could be causing my condition(s), while having an inclination to believe that my depression is a symptom of something physically wrong and went there with the intention to either find out or rule out any possible physical condition before exploring the psychological side of it or even consider taking any for of drugs. I have a very strong aversion to ANY medication, find that drugs are prescribed too liberally and have witnessed first hand at many occasions the devastation that a wrong prescription can inflict on someone. I made that clear in the first few minutes we talked, that I wanted someone to help me explore my problems in this fashion.

    Well of course (with my luck!) that doctor IMMEDIATELY jumped to the conclusion that I was having a depression and that ALL my physical symptoms were caused by it. I wish I remembered all the details but I was hopping to get a full physical check, a referral to get an MRI scan done, a referral to an ENT specialist for the tinnitus, etc…but she categorically refused the MRI and spent the better part of a VERY COSTLY session I cannot afford to try to convince me that taking Effexor WILL FIX ME. Including “why” it is the one drug that will work for sure, but she obviously failed miserably in her attempts otherwise I would not be discussing it here. Her whole theory was about a chemical imbalance that needs to be addressed, but in her mind it is the cause and in my mind, it’s just a symptom. Well I don’t take pain killers when I’m hurt; pain is jut a symptom, I ride it… Same for a headache—I won’t take an aspirin. I’ll go breathe some fresh air and drink a glass of water. In the same thinking, a cold untreated will last 7 days, but if we treat it’s symptoms it will last only 1 week (!!!). I guess you get my drift.

    I left the clinic with a prescription I didn’t take of course, nor do I have the intention to take it, with a very bitter taste in my mouth and an appointment to get blood sample and urine for testing at an outrageous cost for a very minimal set of tests (at least that), which did turn out OK just as I expected. I knew I didn’t have diabetes, AIDS, hepatitis, mononucleosis etc. I wish I had a complete blood work done; this one had not enough check marks on the lab form (in my opinion, then again who am I to say, the biased doctor knows best). I’m more concerned about poor irrigation of the head, or maybe excess pressure of the liquid in the brain not sure what it’s called, maybe even a tumor not necessary cancerous, who knows, I’m not the expert.

    So in conclusion: what I find appalling and shocking after reading your very interesting and informative article, is how can a person in my condition and not knowing the intricacies of the medical trade can be expected to have the psychological know-how you explained AND be able to put it in practice when going to see a doctor who SHOULD be professional and unbiased at ALL TIMES in my opinion? It takes me a lot of energy just to jump through the hoops to get to see one and even more to decide to open up to one; the last thing I had on my mind was to have to deal with all the factors you mentioned in your article. Seems to me that a doctor in such a state of mind should stay home for the day, rest a bit and come back when better. Or in extreme cases, just stop practicing altogether. After all, we as patients put our trust and lives in their hands.

    If this what the medical trade has become, there is something dead wrong somewhere. Or maybe it always was and I was not aware of it? I can only conclude that in order to get properly treated, a patient has to manipulate the so-called professional who rakes in a fortune pretending to help others. And if the patient is in no condition to do so, it is then a “roll of the dice,” cross your fingers to land on a “good” doctor, AND get him/her on a good day as well… seems to me I have better odds to win at the lottery.

    Word.

  • davey

    Jose Perez,

    You’re right, you do have to manipulate them, after 4 years of trying to get help I’ve finally started to get things noticed. It started for me with a sore chest and shortness of breath which I am almost certain started with a infection in my lungs. It then progressed with extreme fatigue, throat swelling, swollen lymph nodes, which I still have. I managed to get an ENT to look inside my throat and lo and behold there was a small growth in my throat. I had to insist he look in my throat. They removed it and he was so sure it was a papilloma. Turned out it wasn’t nor was it cancerous, but they left me in the lurch and still I don’t know what it was. My throat symptoms are still no better. My chest is still always sore and as soon as I try to do anything my lungs go like lead.

    Recently i got a CT scan done privately and lo and behold, more problems. I had to insist my private GP send me for this. I have bone weakness and osteoporosis. At my age I shouldn’t have it. I’d been telling the people I’d seen about my back pain for the past 2 years. I’ve seen an endocrinologist who was trying to be dismissive but I stood my ground and he’s ordered a load of blood tests. He had to admit i should not have these bone problems at my age and could see I was ill.

    I also have been referred back to ENT as I am struggling with swallowing. My neck always hurts and I’m getting bad headaches and dizziness and it feels like my eyes are swollen. I’m going to stand my ground with him as well, although i think it’s appalling the way these people try to treat you.

    It’s completely obvious to me they want to take your money for the consultation. Nice easy bit of money. You have to insist; you know your own body. In regards to your mental problems, I’d keep them to myself. Go look at your physical symptoms and if you want an MRI, referral to ENT, or a CT scan, insist on it. Do not let them palm you off or they will. It’s a horrifying thought but do not be fooled by these people. How can they possibly know what is wrong with you just by looking and listening without ruling things out properly?

    Davey

  • Jose Perez

    Davey,

    Yes I am planning to avoid mentioning anything about the mental side of things to the next doctor I see. Obviously I’m done with that one as I know nothing good will come from any subsequent visit with her and I am not in a position to waste any money as I have Zero income.

    I’m now waiting to have medical insurance again so that at least a portion of the expenses will be covered, and thanks to this article, I’ll be better prepared for the next doctor.

  • davey

    I’m glad to have been able to give you a little help, Jose Perez. You really don’t expect things to be like this; my thoughts always were you get ill, the medical profession does its best to get to the bottom of it and help, but as soon as it becomes a complicated problem there’s a sharp cold reality waiting for you, and the medical profession is nothing like you thought at all.

    Nowadays especially they are businessmen. It’s like bartering to get help. Ridiculous.

    Davey

  • Hyde Park Dissenter

    Very often when doctors don’t know, it’s because they don’t want to know. A good way to cope? If you become aware that a physician dislikes you, ditch him immediately and go elsewhere. The same holds true if you dislike a physician: just leave and go elsewhere.

  • Hyde Park Dissenter

    To be fair, too often when patients don’t know, it’s also because they don’t want to know: they deny, deny, deny: they don’t want to know that they need to lose weight, that they need to change their diet, that they need to stay on their blood pressure medication, that they need to stop drinking. The most dangerous situation is when neither patient nor physician wants to know!

  • [...] as if it was less likely than it actually was, something I’ve written about in previous post, When Doctors Don’t Know What’s Wrong.  Neither of us wanted me to have what I ended up [...]

  • I’m caring for my two elderly parents in my home. My mom has dementia. She is extremely anxious, and in pain all the time. I try not to call the doctor too often, but I can’t just ignore her complaints—I need help from the medical profession to determine if what she’s experiencing is serious or not.

    I’ve been taken aside by her doctor (a geriatrician) after an appointment and told that with her “condition” (dementia) her perceptions of pain and other ailments will be “off.” I told the doctor that I understood this, but that his office actually received far fewer calls than they would have if I called about every problem she complained about. I have to evaluate each pain and its duration, then ask for their opinion about some, in case there is something legitimately wrong.

    How are geriatrics doctors taught to diagnose elderly people? Do I need to become obsessive and write down every thing that goes in and out of my mom as well as every pain, when and where it happens, to justify her concerns? How do I talk to a doctor about problems that belong to someone else and be an adequate advocate for her health?

    Jael: Frankly, it sounds to me like you need a new geriatrician. The comment that your mom’s perception of pain will be “off” because she has dementia seems a bit self-serving to me. Certainly, demented people are unreliable historians, but they experience pain just like the rest of us. Just makes it more challenging to figure out, meaning it takes more time.

    Alex

  • I agree re: it takes more time to find out. I also agree to some extent with the doctor—my mom sees every pain as being “something wrong”,”no matter how fleeting. She wants it gone right away, or wants to know “why” she’s having pain.

    I wonder sometimes if a geriatrician becomes somewhat inured to the complaints of the elderly—the elderly are often lonely and depressed as well as anxious and frightened about what seems to be an extremely limited time left to live, and that fear can be expressed in their reaction to what’s going on in their body.

    I know it’s tough listening to constant complaints—I admit to a desire to ignore the whining on a regular basis. This is why I count on the medical profession to help me weed out the stuff that’s not serious.

  • [...] When doctors don't know what's wrong How to best work with your doctor, and why some go to the psychosomatic diagnosis when they don't know what's wrong. Also how to think together with them to reach a complete (and more accurate) diagnosis. http://www.happinessinthisworld.com/…w-whats-wrong/ [...]

  • David

    I have been suffering from simple partial seizures for over 13 years. i was born with a condition that usually causes partial seizures in the second half of the second decade of the persons life (i.e., after age 15 and above). However, because I have learning difficulties, here in the UK, I have been ignored, lied to, lied about, the wrong information put in my medical notes etc. And refused any epilepsy type tests for many years; it wasn’t until last year that i finally got one (an EEG test). However, as these simple partial seizures do not usually happen whilst staying still and lying down, both necessary in the normal EEG test, nothing showed up.

    I was told I could not have any medication and was left to manage a huge increase in the seizures completely unmedicated. This is not just one neurologist, this is several. Fortunately, at my wits end, I searched and searched and found a way my GP could prescribe AEDs without having to have permission from the neurologists. I asked for Topamax for my headaches, which had not responded to any treatment. This helped both my headaches and seizures.

    I then saw a neurologist in Liverpool who refused point blank to listen. “The next patient will be waiting.” He gave me a diagnosis of Non Epileptic Attack Disorder, and told me to “look it up online when you get home.” He refused to discuss it further.

    Since then, he has said in a letter to my GP that now he knows I am having success with the Topamax, he no longer thinks it is N.E.A.D. However, I had told him all this information in the first visit, he had just refused to listen! How do I go about getting a diagnosis as he thinks I should be happy that the Topamax is helping and doesn’t care?

    David: What a frustrating experience this must all be for you. My only advice is: keep looking for a doctor who you feel listens. They do exist. They are worth their weight in gold. Don’t give up until you find one.

    Alex

  • Haylee

    Thank you! The past few times I have gone to the doctor I have intuitively thought of these ideas but thank you for verifying them. Do you think the reason that some doctors do not do well with believing patients has to do with not having enough empathy or using the other part of the brain that is not about logic or reason?

    Haylee: Even genuinely empathetic doctors (people) have days where their empathy seems to vanish. I don’t think doctors in general disbelieve patients as much as discount things they say.

    Alex

  • Jeff

    I can definitely relate to what you’re saying. I recently had hip surgery to repair torn cartilage within the joint and I stayed overnight at the hospital. I had oxycodone/acetominophen that night. The next morning I told my nurse that my heart was beating kind of differently. I told him it was probably due to the drug as it causes that. I told him I was stressed as well. After that revelation, I was subjected to EKGs, blood tests, and a CT scan with contrast dye injection just to determine if I had a pulmonary embolism. I was desperately trying to reason with the staff that I was feeling fine and the effect of the drug had worn off. My heart was feeling fine and the irregularity was probably due to the immense pain and stress of surgery. They would not listen to me and wanted me to take these tests. I felt like they were very forceful in their decision making process. The doctor kept threatening me with the notion that I might die. He never took the time to answer any questions I had. They didn’t really listen to anything I was saying and wanted to inject me with morphine because I was having “chest pains.” I’m 21 and I’m extremely athletic. I was extremely doubtful I would have blood clotting issues, as these don’t run in my family. It just shows me how narrow-minded sometimes doctors can get. I know they were concerned that I might have PE and might die, but they never took the time to explain anything and I almost felt like they subjected me to all these tests just to cover their asses. This was my first run in with medical care and I was not impressed at all. I felt like I was in a cage with people in white coats running around making decisions without listening to anything I was saying. I’m applying to medical school this summer. My goal as a doctor is to be willing to answer questions and explain things thoroughly so that my patients feel respected.

    Jeff: A worthy goal. Best of luck to you!

    Alex

  • Ariane

    I have just gone through a terrible situation with physicians and was told I was “somatic” by some of them. The other ones just shrugged their shoulders and told me they hadn’t a clue exactly what was wrong with me. I am not sure how I could be “somatic” when I had abnormal labs and abnormal imaging. How in the HELL can you make that up? GEEZ!!!! The medical community is going to HELL in a handbasket. TOO MANY GREEDY PHYSICIAN WITH THEIR HANDS OUT AND CALLING PATIENTS “NUTS.” I HATE PHYSICIANS.

    Ariane: I’m so sorry you’ve had this experience. That you’re greatly frustrated is clear. However, to be fair, there exists the same mix of quality among physicians as there does in all fields. Not all physicians are bad, and certainly, in my experience at least, most aren’t greedy. Please take a deep breath and continue searching for a compassionate physician who will stand by you and continue to search for what ails you.

    Alex

  • Patient trying to be patient..

    I have a diagnosis of CFS, but after 3 years with the diagnosis, it was discovered by chance that many of my symptoms are steroid-responsive, so I’m being tested all over again for weird and wonderful things. My “incurable” diagnosis has, however, led to me feeling that I should go into every medical appointment saying: “I know you can’t fix me and I’m really sorry to bother you, but…” I don’t, but I certainly feel like I ought to. I finally have an awesome doctor who spends time with me, even when he is running late, to work out which tests need doing to work out if there is something treatable wrong when a new symptom (or an unexplained old symptom) gets out of hand. I finally feel that between my 2 specialists and my family doctor, we will get to the bottom of things eventually. Thanks for giving us patients an insight into how doctors think, and more importantly, how to help them to stay open-minded about us. I’m a great believer that being patient, open-minded and relaxed will get you the best possible treatment… it might not be the fastest option, but it will probably be the most pleasant for all involved, and is most likely to get the best results. I’m not saying I’ve never gone to the doctors in a state of pure desperation due to the severity of my symptoms and begged for some relief, but hey, we all have off days.. :P
    It’s great to see a doctor being so openly reflective :) Reasonable, compassionate doctors do exist!!

  • tanya

    My son has been very ill for a year we have been to 23 different doctors with no answers. I’m so sad and depressed all the time; now he tells me he knows he is dying and now he has given up completely. I need help.

    Tanya: I’m so sorry to hear this. Unfortunately, I’m not able to to give medical advice in this forum. You must not give up. Continue looking for a doctor who can figure out what’s wrong with your son.

    Alex

  • kelsie

    Alex,
    This is a great article and becoming more important in today’s world of modern medicine. I have experienced symptoms my entire life of kidney issues, stomach issues, and for the last 10 years my symptoms have included my ears and head area. I have swelling, pain, extreme fatigue, dizziness, pressure. I have had a lump on my neck since high school which has changed shape and also has changed location and position. It began as a round lump behind my ear in high school and “popped” one day and turned into a vein shaped lump. I have been given weird looks by the doctor and the ENT doctor. The ENT doctor called it bizarre and emphasized that he had never never never never in his 15 years of practice seen this. I couldn’t help but tear up. I just felt like a monster and a non-helpable one at that. He has no idea what to diagnose it as but he says he feels it is most likely more than one disease process causing my array of symptoms. It took all I had not to scream that it’s just years of not being taken seriously which has caused my symptoms to progress and honestly I don’t know how much more it can progress. Ok so this round of doctors first doctor was uncomfortable about it so I didn’t press the issue (and reading your article I’m glad I didn’t). He has never seen this before, but he suspects either vitamin k deficiency or an autoimmune issue. He orders blood work. All blood tests are normal. He proceeds to do an ultrasound. The ultrasound shows a few hypoechoic nodules. He orders a CT scan. This shows an enlarged parotid gland and maxillary sinus disease. I am referred to the ENT, who again has never seen this. He called it bizarre and emphasized that he had never never…. seen this before. He suspects that it could be a nerve because it wouldn’t show up on imaging. I feel very strongly if they could remove it it would relieve a lot of symptoms, but I also know there are other dangers involved. The doctor tells me he wont operate unless it was the very last resort because of the location in the neck. He put me on prednisone and I have two weeks for this prednisone taper. My question to you is do you know of a list or website of doctors that would give second opinions? I feel like a freak each time these doctors look at me and it makes someone feel an incredible sense of urgency due to the rarity. I go to sleep at night wondering if I will make it to morning. Something isn’t right with my body and so many years of being told doctors know all about the body and they look at me like a freak makes you wonder how much longer you have left. I have two special-needs children who have nobody else in their lives. I am their all and they are my all and any advice you could give to me to help me be more proactive so we don’t lose each other I would be forever grateful. Thank you!

    Kelsie: I’m so sorry to hear you’ve been having such trouble getting a diagnosis. I wouldn’t check websites for doctors to whom you could go for a second opinion. I’d talk first with your insurance company to see which doctors they will cover. Best of luck!

    Alex

  • Anonymous

    Excellent, excellent post. Curious, what was the diagnosis that led to the nausea of 30 years?

    Anonymous: It was actually an odd presentation of gastroesophageal reflux.

    Alex

  • Kayce

    Recently I’ve taken ill (about 10 months now). So ill with stomach pain and sever cramping that I lost my job and in turn where I resided. All my labs and CTs have been clear with exception to bursting ovarian cysts. Long story short: in bed with serious pain almost 24 hours a day. No income, no insurance. I found a clinic nearby and had a good doctor that was managing my pain until she quit. In turn a new doctor took her place. It’s the basic sliding-scale clinic for people in my financial situation. The new doctor has refused to treat me or continue my meds because she doesn’t know what’s wrong with me. She has refused all help. What does one do with this kind of doctor/situation? Besides the fact this doctor has told me the clinic has grants to help someone like me but, she never follow through with them to get me where I need to go, which is clearly away from her. So in that I said so I just keep going to the ER when my attacks are so bad I’m screaming in pain? Her response was this: She threw her hands up in the air rolled her eyes and said and I quote: “I don’t know what to tell ya.”

  • JJB

    Hey Kace, don’t feel bad…my doctor told me that the reason my daughter was vomiting every week was that she had heartburn, even though our apartment flooded entirely with over two feet of city sewage when the line broke. My daughter was soon after hospitalized and had to have surgery; she had sepsis, with staph and viral and bacterial infections that they did not disclose. However, I have had low grade fevers and paresthesias as well as the feeling of having to vomit for a few years now since it happened, as well as a growth that covered two teeth, and yet my doctor said that it’s just my thyroid. I asked to be tested for parasites since my whole leg was scraped up and I walked through the raw sewage for quite some time thinking it was just water from a pipe that burst. Also, my symptoms started just after the sewage leak and have grown worse, not to mention I was told I had chronic malabsorption, severe anemia, and scurvy. They said they believe I have MS or lupus…yet tell me that I’m the one in need of psychological evaluation? I WAS IN RAW SEWAGE FOR OVER AN HOUR WITH MY ENTIRE LEG SCRAPED UP AND MY DAUGHTER WAS HOSPITALIZED…I actually had one doctor tell me that it was just depression and told me that sometimes “when bad things happen to good people it’s because they’ve been evil in their past life.”

    It’s been nine months since my child was hospitalized and just because I tested negative for the staph culture and my blood work has improved they are refusing to do further testing until over a month from now, because they say it’s ALL due to my thyroid, even though I’ve had the thyroid issue for years and have NEVER felt this sick, and it’s at the same level it’s always at. I AM SO TIRED OF DOCTORS.

    Not to MENTION that over EIGHT other kids had the same symptoms after being in my house, and one family’s newborn died cause unknown after they spent most of their time with me. I NEED TO KNOW IN DESPERATION WHAT TO BE TESTED FOR WITH A SEWAGE EXPOSURE with symptoms of cyst covering two teeth (non-cancerous), beginning with constant strep throat that would not resolve with medicine, and then numbness and tingling (which I thought was due to 2008 spinal fracture but 8 others had this TOO) largely in feet and toes but also odd lower muscle problems. Initially right after sewage exposure I couldn’t swallow, not only like the food wouldn’t go down but like there was just no room. My facial muscles started locking up and for about fifteen minutes I couldn’t move. This was shortly after the sewage exposure. I then have had the cyst removed from my mouth but have chronic low grade fevers.

    Other risk factors include doing stims/bowel/stoma catheter care/urine exposure daily, open staph wound care of pressure sores, a dog that was extremely difficult to potty train, and prone to diarrhea outbreaks on the carpet no less, as well as a room where he constantly uses as his personal toilet when we’re not looking that I have to clean up, mold taking over the walls of my basement apartment, which was built in 1900; workers removed the newer wall, sandblasted the old brick and let all the dust from that fly over our bed. I have since gotten rid of the bed but this is when I got majorly sick.

    Other possible risk factors are that I ate grapefruit out of a dumpster that I immediately began throwing up from, as well as some slightly moldy peaches, in which I also became fevered/strep like feeling. I quit my protest of food waste and stopped eating food from the “freegan” source but still this is obviously a slight risk factor.

    Not to mention that before I had the sewage break I had fractured my spine and then reinjured it, and the next day woke up unable to get out of bed not due to back pain but because it was like I couldn’t move my feet and legs, and could barely walk. Even though I had fractured my spine, I guess because they didn’t believe me they said it was just that my potassium was at 2. Whatever that means.

    I also have problems walking; it feels like I’m drunk and especially walking up stairs. I also hit my head on the metal part of the car wheel before I fell on the pavement when I fractured my spine so I am very lucky just to be able to walk! A neighbor said all she could do was say a prayer for me and you know I’m so lucky to be able to walk and just about ready to give up on the doctors and start trying to go to church because it’s obviously the only thing that made any difference.

    Oh yes, I had been all summer at Hubbard county in the woods too but they won’t do a Lyme test even though I have quite a few of the symptoms. and this all occurred over the same summer.

    Not to mention that my doctor’s notes were most often not only incomplete but completely OPPOSITE of what I had said….

    Example: pt reports NO numbness or tingling, when it felt as though my foot didn’t even exist! I had to just simply drag it along and couldn’t even put weight on it.

    Why is it that THEN it was ALL in my head, but now that 8 other children have similar symptoms and my daughter HOSPITALIZED with several infections…

    NOW they want to test for major things like MS instead of a viral, bacterial or parasite? They are REFUSING to test me for parasites, even though I have insurance and asked very politely.

    Wouldn’t a parasite be most likely since I had sudden major anemia and loss of vitamins/potassium/???? SINCE I WADED IN FECES for OVER AN HOUR after I’d just scraped my entire lower left leg?????????

    NOT TO MENTION the dog I FORMERLY LIVED WITH HAD LIVE WORMS IN IT’S FECES WHICH I HAD TO CLEAN UP!!!!

    BTW the doctor who told me I was evil in a past life when I mentioned that I had just been sexually assaulted, which is the reason I marked yes for ONE question on the depression survey…was Buddhist.

  • Ariane

    Well…come to find out I had a vitamin D deficiency and I was extremely anemic. My level was “8.” Then, I was told that shouldn’t be causing a problem. What the hell is that supposed to mean? After having the anemia and vitamin D corrected I am FINALLY feeling better.

    Am I missing something here? Why are physician becoming more and more APATHETIC? If they can’t find out exactly what is wrong with you IMMEDIATELY you’re depressed, anxious or you are causing yourself to be sick.

    I really have little faith in traditional physicians anymore. If the money and greed was removed from medicine we MIGHT be better off with physicians who really care about patients.

    BTW: I ASKED for the vitamin D level to be checked as you have to OBVIOUSLY take matters into your own hands.

    Alex…..you really need to talk with your colleagues. They need to remind themselves WHY they went into medicine. If they want to belittle, offend and treat patients like they are IDIOTS they definitely have chosen the WRONG profession.

  • lisa kendall

    I have had multiple illnesses and in which I have been the one to bring it to the front. I have had cancer 5 times, had a perforated ulcer, heart problems and now I have gained 50 lbs over just several months. Gone from being an over-achiever and full of life to just existing. I am now having a problem with retaining so much fluids from my waist down that most days I can’t walk, wear clothing nor footwear… And its extremely painful and overwhelming. I’m only 52, yes 52. I think its a young number considering what I’ve been through. I can’t work, can get disability and I have Medicaid and a pretend doctor who has yet to see me or help. Very disheartening. This is to be my life?

  • Laura

    Dear Doctor: I see how many people have responded to this and it amazes me. I feel like I am not alone. Thank you so very much for your humanity. I have been ill for a year and have seen rheumatologists, neurologists, allergists, and gastroenterologists. I have been told I have anxiety and a somatoform disorder. I am struggling daily to function and have found this depiction they have ascribed is now affecting my psyche on many levels. I feel demoralized. I now have a fear of doctors and anxiety that surges at the thought of going to a doctor. What I learned is that the source was my PCP and she so graciously referred me to specialists; however she placed the psychological label on me when referring and it has not been dismissed. I want my life back and I want my dignity back. I am not going to share my symptoms because I see the posts and I am not sure you would even have time to read this. Thank you for this honesty even if it was for you.

    Laura: You’re definitely not alone. No matter how demoralized you may get, never give up on trying to identify the true source of your symptoms, and even more importantly, on trying to manage or even resolve them.

    Alex

  • Ellen

    When my daughter’s doctors didn’t seem to know what was wrong, I didn’t know what to do. Afterwards, I looked up what I should have done, and I found “How To Get Your Doctor On Your Side.” Without even knowing it, I had already done the recommended steps—and it hadn’t worked. Not only didn’t it work, it resulted in retaliation—when my daughter needed surgery.

    I am quiet and reserved by nature. Although I can write until my fingers fall off, it is not easy for me to actually speak up (talk). Since then, the need to speak up and get the doctor on our side has happened again. This time, I was the patient. I followed the steps. The result? Retaliation in the form of verbal abuse and abandonment of the patient. Both of the incidents above have been greatly summarized, but too many doctors perceive innocent questions and clarifications as personal attacks. I don’t understand it.

    Do you have any additional advice? Patients cannot do this alone. We need help from doctors such as yourself. Thank you in advance for any advice you can give.

    Ellen: When you find a doctor retaliating against you in some form for simply asking penetrating questions, first do your best to check yourself to make sure you haven’t sent some antagonistic signal (having someone else with you in the exam room to provide a more objective viewpoint may be helpful). If you honestly can’t see that you have, find another doctor as quickly as you can. Doctors are, of course, human too, many with the same annoying ego problems as everyone else (or worse ones). Ask the coordinators at the doctor’s offices you think you want to try out which of their doctors they would go to. They almost always pick the best ones. Good luck!

    Alex

  • PWNOONE

    I love this article.

    I think until you have something that seriously really requires medical attention, you kind of aren’t clear on what it means to be a patient and so you flounder a bit with the entire medical system, including how to interact with doctors. I’ve two experiences that have been sort of like a boot camp for how to survive being a patient.

    The first time was when I started having symptoms of ulcerative colitis. Up until that point, the only illnesses that I ever experienced that required doctor intervention were sinusitis and bronchitis and the general run-of-the-mill stuff. So to go to a specialist and be this sick was frightening. I’d traveled over seas and got really sick, but it never improved despite antibiotics. The first GI doctor I saw for my symptoms was from a referral from my then GP. This GI doc was so abnormally harsh with me from the minute I met him. It just completely unnerved me. When he said he needed to do a rectal exam, I nervously groaned, to which he took his glasses off his face and tossed them on his desk in disgust and firmly said, “If you claim you have blood in your stool, then what is it you’d like me to do?” I was shocked. I mean, I’m pretty good-natured, but you know, who doesn’t groan at the idea of getting a rectal exam, right?? He proceeded with the exam, snapped his gloves off when finished, told me he saw no blood and said that sometimes when people get sick while traveling, they stay sick for a long time despite treatment and literally left me on the exam table. End of appointment. I was sick for another year and a half assuming I was just going to have to suck it up and tolerate it. At some point my condition rapidly declined because I was losing so much blood and weight, and my bowel movements were completely uncontrollable. I was a broken person. A different GP referred me to a different GI doc. Night and day! I had a colonoscopy within a week and had my UC diagnosis almost immediately and started treatment immediately. I wasted so much time physically and emotionally suffering, and the disease worsening because I didn’t know that I actually deserved better.

    The second experience occurred almost a little over 5 years ago when I started feeling winded easily, my chest felt tired, and I felt pressure on my upper back. My resting heart rate seemed elevated. I saw my then GP’s NP about it and she told me I was just a sensitive person and it was likely anxiety. It seemed plausible (although the “sensitive person” remark rubbed me the wrong way), but I thought, well ok maybe there’s something to that. But then I started feeling progressively fatigued over the next month and I actually started to run out of breath while talking. Then my left calf started cramping, and I noticed a 4 inch red stripe running along the back of my calf. My calf was some what swollen and began to get very painful. I went to an Urgent Care Clinic because I had coincidentally just read a magazine article about DVTs. The doctor at the Urgent Care facility considered the possibility of it being a DVT which we talked about, but he felt is was more likely phlebitis and when I mentioned I hadn’t been feeling well, he just said I needed to follow up with my GP. I even asked, are you certain you don’t think it’s a DVT? He said if he did, he’d have sent me for an ultrasound ASAP. I followed up with my GP a week later. She said let’s just keep an eye on my leg. And then finally, another week later, the swelling and redness had by then crawled above my knee to my thigh. My GP was booked, so I saw another doctor in her clinic group. He stood across the examination room from me. He asked me some questions while looking at my records on his laptop, and then finally raising his head to look at my leg, and still considering the original dx of phlebitis said, “You just need to go to the gym and work through the pain.” He never once walked over to lay a hand on me, to engage me in a personal matter at all. I was again shocked. It was so clear to me that I was in trouble; my leg was hot, red and swollen from calf to thigh. It was as if I was having one of those dreams where you’re screaming but no one hears you. And yet I accepted this doc’s ridiculous response to me needing help.

    The very next morning, I felt terrible, very tired and dizzy. But I thought, I’ll feel better if I get up and get moving. Long story short, within an hour, while outside, I couldn’t breathe and I collapsed three houses away from mine on my neighbor’s steps. I regained consciousness, staggered home dizzy, unable to focus my eyes and gasping for air. I told my husband to call 911 and told him that I loved him in case I didn’t get a chance to say it ever again. The paramedics came and rushed me to the nearest hospital where I was diagnosed with a massive pulmonary embolism in both lungs. I was administered tPA in the ER, and spent 3 days in the ICU and 4 days in the cardiac unit.

    As over simplistic and unfair as this may sound, I see it this way: three doctors nearly killed me. It would be easy to be bitter about doctors and the lack of care I received from these experiences, but in fact, it was a marvelous, quick thinking ER doctor who probably prevented my death. And my ICU doctor was one of the most compassionate, special human beings I’ve ever had the pleasure of meeting. When I was admitted to the ICU and things had settled down, my husband had left my room to call my family and his employer and there was a moment where I was completely alone and I was able to start processing all that had occurred. And then my ICU doctor walked in my room to introduce himself. I looked at him with what I can only imagine was a mix of disbelief and bewilderment in my eyes, and then I started to tear up. He then sat on the side of my bed, and took my hand in his, and said how life changes in an instant. He comforted me like someone who loves me would comfort me. I can never fully explain what that felt like or meant to me, how that transformed that entire experience for me.

    So yeah, I’ve had some really trying experiences with doctors, but I’ve become a better patient for it. I’m prepared when I see my doctors, I ask questions when I don’t understand, I respectfully but firmly stand up for myself more. I treat my docs’ staffs with kindness and appreciation, and don’t get bent out of shape when a doc is running late (my GI doc always run late and it’s because he takes so much time with his patients). I have fired doctors I don’t care for without guilt, and have managed at this point, through trial and error, to surround myself with excellent providers who treat me like a partner in my own care.

    Ultimately, I don’t need my docs to have all the answers. I just want to feel like my doctors are really in it with me, that they see me, really SEE me.

    PWNOONE: Wow. I hate hearing stories like yours. Based on your report, missing those PEs was gross malpractice. So glad you’re all right now.

    Alex

  • PWNOONE

    Thank you for saying that, Alex. I know what happened to me but having someone acknowledge it validates the experience, in a way, even still, 5 years later. But, I am strong and healthy, and I am so grateful for my life, so, so grateful. I am all right, indeed.

    And really, thank you for being so honest in your article. You really touched on something here that I think people need to hear. I certainly needed to hear it.

  • Joni

    I loved the article! So insightful on the part of the doctor as well as the patient. It’s funny how when you’re confused and upset that a diagnosis is unavailable you look online and find articles like yours that give renewed hope for people like me to find an answer. I will use the knowledge here in future appointments with my second opinion doctor.

    I recently had a horrific experience and didn’t quite know how to handle it, so I sit here and suffer thinking ITS ALL IN MY HEAD!

    I was grooming dogs and had what can only be described by me as a “spell.” I had double vision, rapid heart rate and couldn’t comprehend to tell anyone what I needed. I knew something was wrong, but could not function as to what I needed to do. The vets took me to the hospital where I was diagnosed as having low blood sugar. I thought ok, they know what they are talking about, and after some IV glucose I felt a little better.

    The double vision stayed with me that day and then that night I started to stutter! Wow! I was confused, but thought it would wear off. Nope, next day my husband took me back to the doctor. I was confused and could not comprehend anything people said and even ran into a glass window. An MRI was scheduled and came up negative for anything. My doc sent me to a bigger hospital to see a specialist. I was admitted to the ER and a spinal tap was done and I slept after that. I was assigned to a neurologist. That evening he decided to try a medication to stop the stuttering and a hospital doctor wanted to try his med also. Thirty minutes after taking the meds I had what can only be described as a seizure. I don’t know what it was, but I could hardly talk, couldn’t swallow, and was having trouble catching any air. The nurses rushed in and put something in my IV and I’m down for the count again!

    The next day I have pins and needle feelings in my hands and feet. I tell the doctor, SO THEY RUN ANOTHER MRI! Which showed nothing again…of course. I later researched the medication Topamax that they put me on and guess what one of the side effects is……PINS AND NEEDLES! Thanks for the needless MRI charges that my insurance refuses to pay now.

    After a week of tests and the spinal tap leaking, I was in massive pain and just wanted to go home. The doctor was as I call it befuddled and sent in a psychologist. Whom after talking to me for 10 minutes said I had conversion disorder!!!!!

    My neurologist did find abnormalities and muscle fasciculations and now I have them all the time and if I overdo it, my muscles hurt terrible. So I was going to give up my fight and just deal with it, but after all the mishaps in the hospital, continuous symptoms, and reading this article, I am going to get a second opinion or a third if need be. I’m sorry that the doctors could not pinpoint what it was, but I don’t feel that after talking to me for that short of time and not knowing me, gives him the right to throw conversion disorder at me. I read somewhere that a patient has to have these things for several years before that diagnosis can be given.

    WISH ME LUCK.

    Joni: Definitely, good luck! And strength.

    Alex

  • leroy

    I have been dealing with terrible pain for 2 years now. Had MRI and CT scans done of my lower body and can’t seem to have a doc tell me what’s going on! Now they want to do a liver biopsy—they have me on muscle relaxers and pain pills that just don’t help; it’s gotten to the point where I double or triple my meds just for relief. I don’t know where to to get a real diagnosis. To me these docs are just after money. Can you help or direct me?

    Leroy: I hear your frustration. Doctors are often as frustrated as the patients they can’t figure out how to help (or, at least, almost as frustrated). There are good doctors out there. If you don’t feel yours are good, or are the right fit for you, keep looking.

    Alex

  • Liz

    The trouble is people are human… patient, doctor… and frequently it is the patient who is asked to/needs to humor the doctor in order to get the care they need because no one is monitoring the behavior of doctors. Yes, there are outrageous humans in both roles (patient and doctor) but when we go into professions we can’t always cherry pick the clients we work with and so as the professional we need to learn to deal with it and not let this get in the way of our behaviors.

    An analogy—I have a kid with brain damage who can sorely try the patience of anyone who has to work with her for any length of time. Her special ed teacher told me she was done helping my kid, the heck with her. I told her that when she signed on to teach special ed, included in her students would be kids like mine. If she didn’t like working with my kid that was fine, I didn’t like parenting her sometimes either; HOWEVER her job was to deal with her, teach her, work with her and not let her irritation show; she was the adult here and asking my kid to change to meet her needs was both unreasonable and due to her disability impossible; perhaps she would be happier teaching in the regular classroom and I’d be glad to discuss with principal my observations and conclusions. I wasn’t as blunt as this but that was my point (I was beyond being tactful with this woman as tact didn’t work).

    I used to work with adjudicated youth. One of the more valuable lessons I learned is how to act caring and be caring without being so emotionally involved that the kids could push my buttons, make me angry… I think this is a valuable skill for anyone who works with humans. I know it certainly helped me in my parenting of a very difficult kid.

    As a multiple cancer patient who has been diagnosed with hypochondria several times instead of cancer (and thus the delayed cancer diagnoses which didn’t help the situation—in each case it was cancer) I have found that most of the doctors I have dealt with want compliant, grateful (yes I had a doctor tell me that most of his patients are grateful and what is wrong with me that I am angry; another one asked me why I was crying immediate after she gave me a cancer diagnosis; that I knew breast cancer was not a big deal as I had had it on the other side before—really not a big deal? To her maybe but not to me; and then there is the non-Hodgkin’s lymphoma dx’ed as hypochondria for several years despite B symptoms where I had not yet wrapped my mind around the no cure part and my doctor at a big name comprehensive cancer center told me to quit worrying about which treatment was best because no matter what we did it wouldn’t change the outcome and I just needed to accept that—if it were only so easy—and be grateful that there were treatments to get rid of symptoms. There were gentler ways to say that, not to mention I do think that part of treating cancer is at least minimally recognizing/acknowledging the emotional turmoil that goes along with the dx), “happy” patients—never mind that a cancer diagnosis is an emotional earthquake and emotions can include anger, shock, disbelief, anxiety…

    Often the patient is expected to be the adult in the relationship and deal with the problems the doctor has in order to get good care, timely dx’s… The doctor has seen gabillion patients with X diagnosis and I think tends to forget that, I, as the patient, have not and further more this is me you are talking about who is experiencing this on a personal level for the very first time.

    But in the end it comes down to the fact that we are all imperfect human beings, the doctor is more of the “adult” in the relationship in a couple of fundamental ways (e.g., not expecting the patient to put aside everything to not show distress, etc., and is the professional who should act professionally despite personal feelings), and the patient needs to try to behave like a reasonable adult and not a petulant child. I teach for a living. I don’t get to pick the young adults in my classroom, nor fire them if they are brats; instead I am expected to deal with them professionally and do my job in such as way that they have no idea how I personally feel about them (and actually the lessons I learned working adjudicated youth comes in handy here). The expectations for a doctor should be the same.

    Liz: I completely agree with everything you’ve written here.

    Alex

  • Annie

    Alex, you seem like the most reasonable person to talk to. I’ve been in and out of doctors for approaching 6 years now. All I’ve even wanted and wished for is a diagnosis, yet I feel like because of perhaps my age or otherwise I’m not taken seriously by my practitioners. I may only be 20 but I understand a lot in terms of human biology, not enough to even attempt to claim I could diagnose myself but enough to know that something is wrong. I have had severe abdominal pain since 14 and I spent the first six months just being tested repeatedly for STD’s of which I had none. Then they simply completed an ultrasound and left me with “most abdominal pain goes without successful diagnosis.” I persisted anyway as I felt that to be so restricted so young was by no means fair and I wasn’t about to just sit back. I received a cystoscopy and an x-ray but I was then confronted with the same statement.

    Apologies that this has been a little long-winded but I really want to get my point across about how long it has taken and how brushed off I feel I have been. All I want is a diagnosis. I’ve said many times to my parents and partner my doctor could tell me I’ll die in a year, so long as I spend that year without pain I’ll be happy. I hate not having a diagnosis, but I hate even more that it seems my doctors don’t care if I get diagnosed at all. Sometimes I wonder, what if they were ill, what if they were to have my symptoms, what if they were in my shoes? I can almost guarantee they wouldn’t rest until they reached a diagnosis.

    Could you just please tell me how to get their passion to reignite so I can get the diagnosis I so desperately want? How can I make them listen that my symptoms are real, and if only they could see me during an episode they’d see how bad it can be.

    Annie: My best suggestion is to search for another doctor. Your best bet (though by no means a guarantee of success) is to go to an academic medical center. I completely understand how frustrating not having a name for your condition must feel.

    Alex

  • Ellen

    Annie, hang in there. My daughter had a similar experience at age 16. Twice. Her physical symptoms were not taken seriously because she had a history of depression and an eating disorder which was in remission. So the doctors’ opinion was that her pain, nausea, vomiting, and weight loss could not possibly have a physical cause. Her GI doctor did tests that were not appropriate for her symptoms and then told her to “get her head straight.” And even when her symptoms were noted in the medical record, both times it was recorded as “abdominal pain” rather than pain in the specific portion of the abdomen that she was describing. A GI doctor called it “functional pain.” But functional pain is pain for which the doctors have not identified a cause. Well, we persisted, tests were reluctantly done by the doctor, and it was found that her gallbladder was malfunctioning “markedly below normal” per the test. This is a known physical complication of an eating disorder. Three months later, she had a blow to her appendix. Once again, the pain was blamed on psychological factors, when she needed surgery. Yes, you should go to another doctor, but I strongly suggest that you do not in any way indicate that you have been unhappy with previous medical care. You are likely to be labeled a “problem,” and don’t be surprised if some doctors do whatever it takes to get you out of their office asap, so that you can become someone else’s problem. I’m not saying it will happen to you, but it could. Just be careful and don’t give up. Annie, if you or your parents need someone to talk to, I give Alex my permission to disclose my email address to you.

  • Dexiy D

    I wish I had the energy to tell my story but something many of you should consider… CHRONIC LYME DISEASE! Especially if you have symptoms or have been dx’d with MS or fibromyalgia or CFS. If you have migrating pain, symptoms that are random and change frequently. If you feel like you KNOW something is wrong but just cannot figure it out. If you have been to many specialists but no one knows what is wrong. So many of your posts remind me of myself. I was dx’d with MS after years of searching for an answer, only to find out that I did not have MS. Then they called it “pre MS” (as if to say I am developing MS). At last count I had 18 brain lesions no one can explain. I have wicked symptoms from head pain to chest pain to GI problems to dizziness etc. So severely anemic that I receive IV iron every 6 months. I finally tested positive for chronic Lyme disease and went through some treatment. Taking a break because it got too expensive. Insurance will not cover because they still do not recognize this as an illness. It is worth looking into!

  • jjb

    Hey Kace, don’t feel bad…my doctor told me that the reason my daughter was vomiting every week was that she had heartburn, even though our apartment flooded entirely with over two feet of city sewage when the line broke. My daughter was soon after hospitalized and had to have surgery; she had sepsis, with staph and viral and bacterial infections that they did not disclose. However, I have had low grade fevers and paresthesias as well as the feeling of having to vomit for a few years now since it happened, as well as a growth that covered two teeth, and yet my doctor said that it’s just my thyroid. I asked to be tested for parasites since my whole leg was scraped up and I walked through the raw sewage for quite some time thinking it was just water from a pipe that burst. Also, my symptoms started just after the sewage leak and have grown worse, not to mention I was told I had chronic malabsorption, severe anemia, and scurvy. They said they believe I have MS or lupus…yet tell me that I’m the one in need of psychological evaluation? I WAS IN RAW SEWAGE FOR OVER AN HOUR WITH MY ENTIRE LEG SCRAPED UP AND MY DAUGHTER WAS HOSPITALIZED…I actually had one doctor tell me that it was just depression and told me that sometimes “when bad things happen to good people it’s because they’ve been evil in their past life.”

    It’s been nine months since my child was hospitalized and just because I tested negative for the staph culture and my blood work has improved they are refusing to do further testing until over a month from now, because they say it’s ALL due to my thyroid, even though I’ve had the thyroid issue for years and have NEVER felt this sick, and it’s at the same level it’s always at. I AM SO TIRED OF DOCTORS.

    Not to MENTION that over EIGHT other kids had the same symptoms after being in my house, and one family’s newborn died cause unknown after they spent most of their time with me. I NEED TO KNOW IN DESPERATION WHAT TO BE TESTED FOR WITH A SEWAGE EXPOSURE with symptoms of cyst covering two teeth (non-cancerous), beginning with constant strep throat that would not resolve with medicine, and then numbness and tingling (which I thought was due to 2008 spinal fracture but 8 others had this TOO) largely in feet and toes but also odd lower muscle problems. Initially right after sewage exposure I couldn’t swallow, not only like the food wouldn’t go down but like there was just no room. My facial muscles started locking up and for about fifteen minutes I couldn’t move. This was shortly after the sewage exposure. I then have had the cyst removed from my mouth but have chronic low grade fevers.

    Other risk factors include doing stims/bowel/stoma catheter care/urine exposure daily, open staph wound care of pressure sores, a dog that was extremely difficult to potty train, and prone to diarrhea outbreaks on the carpet no less, as well as a room where he constantly uses as his personal toilet when we’re not looking that I have to clean up, mold taking over the walls of my basement apartment, which was built in 1900; workers removed the newer wall, sandblasted the old brick and let all the dust from that fly over our bed. I have since gotten rid of the bed but this is when I got majorly sick.

    Other possible risk factors are that I ate grapefruit out of a dumpster that I immediately began throwing up from, as well as some slightly moldy peaches, in which I also became fevered/strep like feeling. I quit my protest of food waste and stopped eating food from the “freegan” source but still this is obviously a slight risk factor.

    Not to mention that before I had the sewage break I had fractured my spine and then reinjured it, and the next day woke up unable to get out of bed not due to back pain but because it was like I couldn’t move my feet and legs, and could barely walk. Even though I had fractured my spine, I guess because they didn’t believe me they said it was just that my potassium was at 2. Whatever that means.

    I also have problems walking; it feels like I’m drunk and especially walking up stairs. I also hit my head on the metal part of the car wheel before I fell on the pavement when I fractured my spine so I am very lucky just to be able to walk! A neighbor said all she could do was say a prayer for me and you know I’m so lucky to be able to walk and just about ready to give up on the doctors and start trying to go to church because it’s obviously the only thing that made any difference.

    Oh yes, I had been all summer at Hubbard county in the woods too but they won’t do a Lyme test even though I have quite a few of the symptoms. And this all occurred over the same summer.

    Not to mention that my doctor’s notes were most often not only incomplete but completely OPPOSITE of what I had said.

    Example: pt reports NO numbness or tingling, when it felt as though my foot didn’t even exist! I had to just simply drag it along and couldn’t even put weight on it.

    Why is it that THEN it was ALL in my head, but now that 8 other children have similar symptoms and my daughter HOSPITALIZED with several infections…

    NOW they want to test for major things like MS instead of a viral, bacterial or parasite? They are REFUSING to test me for parasites, even though I have insurance and asked very politely.

    Wouldn’t a parasite be most likely since I had sudden major anemia and loss of vitamins/potassium???? SINCE I WADED IN FECES for OVER AN HOUR after I’d just scraped my entire lower left leg?????????

    NOT TO MENTION the dog I FORMERLY LIVED WITH HAD LIVE WORMS IN IT’S FECES WHICH I HAD TO CLEAN UP!!!!

    BTW the doctor who told me I was evil in a past life when I mentioned that I had just been sexually assaulted, which is the reason I marked yes for ONE question on the depression survey…was Buddhist.

  • Karina

    Dr. Lickerman,

    Though you wrote this post upwards of four years ago, I want to thank you for it. I am definitely what many doctors would no doubt term a “difficult patient”—I have been in and out of specialists for years. When I was thirteen, I had posterior and anterior spinal fusions to correct s-curve scoliosis that was worsening at the rate of a degree a week. The curves were 97 and 83 at the time of surgery, with much twisting. My surgeon was the second one I had seen, as the first told me that it would stop, it wasn’t that bad (when I saw him, it was 68 and 75), and that I should maybe get it fused, but only posterior. I’m now fused from C4 all the way down, due to have revision surgery in the next few years.

    There begins the saga. Though I’ve never been a very healthy child, the past few years have seen me in an out of just about every kind of doctor. I have recurrent ileuses, intermittent gastroparesis, delayed gastric emptying, Raynaud’s, arthritis in my spine and wrists, osteoporosis, hypertension, intermittent orthostatic hypotension, supraventricular tachycardia, ectopic atrial beats, 140 bpm resting, a heart murmur, acid reflux, migraines, and a weak immune system. They’ve finally diagnosed idiopathic autonomic dysfunction.

    And that’s just what the doctors have on their charts.

    The problem is, I have depression and anxiety. Growing up in an abusive and gas-lighting home, I developed more severe depression that gained disordered eating symptoms. This often leads doctors to tell me that it’s all in my head or that it’s just stress. Well, yes, I am stressed. How could I not be? I feel as though my body is betraying me.

    I am eighteen years old, and so tired of being so sick. I have dealt with homelessness, abuse, suicide, and chronic pain. I live by myself and rely on myself, though still in high school. I have had to relearn how to walk, but I’ll be damned if I get by on your average day. I have good days! But during flareups of my health issues, I bottom out. I have such high hopes for my future, but without any talk of improving my quality of life, of doing anything to treat the symptoms other than throwing more and more medications at it…I worry that the future I desire will never get there. Going to the University of Chicago to become a physician may never happen.

    This post is amazing. Thank you so much for writing it. I continue to fight for a diagnosis—I refuse to accept that it’s all in my head until I have exhausted all other options. I refuse to believe I am just a sickly kid. I will keep looking for answers, keep asking for more options, keep asking for tests and retests. I will not accept the label of hypochondriac, the diagnosis of Munchausen’s by proxy that one particularly rude nurse mentioned, nor the label of “just sensitive.” I know my body, and maybe one day a doctor will finally believe me when I say I know that something is wrong.

    Namaste, Dr. Lickerman. From a Buddhist patient to a Buddhist physician.

    Karina: Never be defeated!

    Alex

  • Kim

    Need advice, please. The whole doctor thing can be true. I have several doctor’s, some I love, some I don’t. I have had brain surgery and you know I know how it goes with doctors. Had a massive headache 3 to 4 weeks so I go to my doctor thinking myself it’s stress from work, and he gives me migraine meds. I take them for 2 weeks but get no better, instead worse, way worse. I go back; more meds; go back third time, and I say, look I don’t know what is wrong but something is. He orders MRI. I have large tumor need surgery right away. I go on to have inoperable tumor and radiation with that. Now 5 years later I have a real serious issue going on and I can’t seem to get answers. I’m desperate. I started off having bad pain in my lower right side, (I did have 20% of my colon removed 2 years ago due to tumor in colon). Sorry if I sound confusing. About 3 (yes 3 months) ago, I started have bad pains in right lower side and stomach along with bad diarrhea. I did go to my family doctor. He really didn’t seem to listen or care; he ordered tests, but all came back good. My pain got so bad I had to call an ambulance and go to ER; they did a test or 2 and sent me home. I ended up going to the ER three times because of the pain. Doctor sends me to GI specialist, who does CT, and a few test and tells me, sorry I can’t help you. He believes it’s IBS. I do not believe this because I have been so sick, low grade fever, weight loss 25 lbs or more, can’t eat anything or I throw up and/or diarrhea. I can feel that I’m getting weaker. I keep calling my doctor with no return call. I can not keep returning to ER. I really know and feel something is wrong and feel like the doctors are letting me die. That’s how sick I am. What should I do?

    Oh, and about appreciating doctors: I wrote my neurosurgeon a poem about the brain tumor and the surgery he did to save my life. When he read it, I could of sworn I saw a tear in his eye, and he really really liked it; he told me so.

    Thank you.

    Kim: I’m so sorry you’re having such a frustrating experience. Unfortunately, across the Internet, the only advice I’m able to offer you is to try another doctor. Best of luck to you.

    Alex

  • Debbie

    Hi, my mother who is 70 has been having issues for about 5 years: she jerks, makes weird noises, has no energy, horrible headaches. When she bends her head down it gets worse. Some days it is worse than others. She is so tired, but cant sleep because of all the pain she is in. She has been checked by neurologist who say there is nothing wrong and it is all in her head. Can you offer any advice? It is so hard to see her go through this. We live in Oregon. Thank you for any advice you can give.

    Debbie: The only real advice I have for you is to find another doctor to evaluate your mom. I can’t, of course, tell what might be wrong with your mother across the Internet, but doctors often fall back on a diagnosis of “it’s all in your head” when they can’t figure it out either. Best of luck to you.

    Alex

  • Amber Phillis

    My doctor never had a clue what was going on with me. They stuck me on different medications guessing that it would help me but they never did a THING!

    A friend recommended Dr. Ben Gonzalez in Silver Spring, MD and he found out that I had a fibroid the size of a grapefruit! No other doctor even got close!

    He wrote an article about what happens when doctors don’t know whats wrong.

    http://www.atlantismedcenter.com/blog/everything-is-normal/

    Might help you a little. :o)

  • Barbara

    So very true. . . sadly, very, very true.

    But you forgot the cost factor. At least down here in Germany it works that way, but I can’t imagine it not coming into play. When they’re low on budget for this month they might just even skip prescribing important medicaments they’d give out otherwise.

    …I admit this article is downright frustrating, because I know these too well. And because my stuff is not on their list … and what I could ask for and could do or suggest myself I have to pay for myself.

  • grace

    Thank you so much for this! I am currently going through a trying time in regards to my health. Some of the points you made in regard to communication and attitude really hit home for me. I have always been a healthy person with no major issues until now. I have been used to going to the doctor with my complaint, getting my trreatment , and then being on my merry way. My multiple issues make me a challenging patient, and my doctor has told me more than once that my case is difficult. I have had to learn to realize that this is going to take some time to get me better. Its difficult when you aren’t well for an extended time period to manage. I have found it helpful to write problems and questions down and to not expect immediate resolution to everything all at once. It seems to work better for both me and my doctor to address one of my concerns or questions each time I have an appointment. This article definitely helped me to realize where my doc is coming from, and has brought to mind several instances of his compassion and his dedication to my well being and recovery. Thank You!

    Grace: So glad you found the post helpful.

    Alex

  • Stephen Shaw

    Hi, I have been seen by many doctors over the years in some of the best hospitals. Many doctors are very pleasant which is nice but I would much prefer an obstinate doctor who actually knows what he is doing. I am one of many who never gets diagnosed with anything. I have been diagnosed with thrombophilia which by definition according to the dictionary is a disorder causing the blood to clot. I am not sure this is a real diagnosis but more of a symptom of an underlying condition. I have suffered nine pulmonary embolisms, two transient ischemic attacks and a mild heart attack. I have had both legs amputated above the knee after two long-winded operations, one eleven and a half hour and another four hour to no avail. I also have a neurological condition which causes seizures although I am not epileptic. I always seem to get told I am making my symptoms up rather than doctors just feeling able to say I am sorry but I do not know what is wrong with you and will probably never find out. This I would much prefer than being referred to as a liar. Why would I lie over something so serious? I am 34 and not ready to die yet. I have even had friends and family who have witnessed my symptoms but these are always set aside as they can’t figure out what it is. I have now given up going to the doctors and hospital as I am clearly never going to be able to move forward with the same doctors I am forced to see over and over again even though I have asked to see someone different. Einstein’s definition of insanity is to keep doing the same things over and over again but expecting different results. This is exactly what was happening at the hospital and doctors. I asked for referrals I thought may be of use to my condition to different departments but kept getting sent to the same departments for the same tests over and over again. Obviously the results are going to come back the same after the fifth repeat of the same test. I would love to find a doctor who would listen to me, to possibly send me to a different department for a new test. Maybe I am wrong but what can it hurt? After all this is my health that is diminishing rapidly. I would hate to end up having an autopsy and the doctors saying oh maybe we should have sent him to that department. Surely I should have some say over the treatment or lack thereof that I receive after listening to them for so many years and getting nowhere. I am so sick of them fobbing me off. Maybe I don’t need the tests I think I should have, but after years of no real diagnosis and listening to them so attentively and following their regimen of medicines and diets, don’t I deserve to get a say in how my treatment is dealt with? As qualified as any doctor is I strongly believe that a patient knows their own body better than anyone else. Everyone is different and unfortunately for my doctors and myself, my body does not follow a text book. Perhaps certain doctors need to realize that each patient is an individual and what works with one person will not necessarily work with everyone. I am going to shut up now as I have prattled on for long enough.

  • KC

    “There should be positive evidence pointing to stress and anxiety as the cause (e.g., you should actually be feeling stressed and anxious about something).”

    The first doctor I saw refused to accept that my symptoms related to a virus months earlier (apparently he’s never heard of long-lasting viruses like polio and AIDS….) and went through a long list of stressful issues. Only because he mentioned “lawsuit” did I recall that, yes, I had a minor legal matter (in the hands of a top lawyer, and the law was 100% on my side)—so non-stressful that I had completely forgotten about it, but that was good enough for him to insist that my only problem was “anxiety” and I could be cured by a psychiatrist.

    The psych report came back with a note that the symptoms I described sounded like a physical ailment (note: fever), and instead of acknowledging that, the recommendation was that I should see another psych, who hopefully would agree with the doctor that this was all in my head and didn’t require any further *medical* investigation.

  • Julie

    You sound like an amazing doc! I wish I could find one just like you. I have been stuck in the “psych” problems rut d/t getting upset and crying when my MD said my depression is causing my enormous array of physical symptoms. She has not ordered tests or sent me elsewhere in almost 2 years. It was a very costly mistake on my part. I have a very hard time trusting doctors because I haven’t met one willing to search outside the box. I’ve been suffering for a long time and just want my life to be somewhat normal again. Any tips on how to find a good doctor? A trustworthy one that won’t stop until they find something?

    Thanks!

    Julie: It’s hard. Quite honestly, a lot of it is luck. I think you can best increase the odds of finding someone good by asking the office staff who they’d pick to be their doctor. They know who the good ones are in their practice. Good luck.

    Alex

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