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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:
- 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.
- Ask a specialist for help. Which requires your doctor to recognize he or she is out of his or her depth and needs help.
- 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.”
- 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.
- 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:
- 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.
- 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.
- 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.
- 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:
- Not wanting to diagnose bad illnesses in their patients. Leading sometimes to an incomplete list of differential diagnoses.
- 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.
- 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.”
- Not liking their patient. Leading to impatience, not listening, and not taking enough time to think though the patient’s complaints.
- Liking their patient too much. Leading to biases #1 and #2.
- 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.
- Wanting to be right more than wanting their patient to get better. Res ipsa loquitur (the thing speaks for itself).
- 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.
- Failing to consider that a test result may be in error. This doesn’t happen commonly, but it certainly does happen.
- 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.
- 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?
- 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.
- Remain reasonable even when you’re irritated. Most doctors, even when stressed, will respond to reason and reasonableness in kind.
- 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.
- 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.
- 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.
- 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.
- 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
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.
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!!!!!
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.
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!
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, 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.
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!
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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!).
“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.
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.
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.
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.
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.
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.
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.
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!
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.
Good advice for dealing with many professions…lawyers, and teachers come to mind!!!
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.
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.
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!
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?”
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.
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.
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
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.
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.
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?
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
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.”
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.
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
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.
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.
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.
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?
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.
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***.
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