How can I trust doctors after so many misdiagnoses?
February 5, 2008 8:59 AM   Subscribe

I have bad luck with doctors and/or diseases. How do I regain trust in the medical profession? To what extent should I do so?

For the most part, I am the picture of perfect health. When I have health issues, though, they turn into an avalanche of misdiagnoses and misery. I'm not sure why.

I've experienced misdiagnoses involving severe strep throat (4 times misdiagnosed), allergic reactions (3 times), mononucleosis, kidney infections (twice), skin infection, and hypothyroid, and that's not EVEN including issues that I'm too embarrassed about to post on the internet. Two of these times I was near hospitalization because my symptoms were not addressed correctly.

Sometimes these have been resolved by repeated visits to the same doctor, sometimes through second opinions. Both of these prolong pain and also make me feel like I'm being pushy or demanding a particular diagnosis. Either way, I am totally burnt out on the entire medical "practice".

So now what? How can I get over this distrust? Just telling new doctors upfront that I think they're wrong? Writing letters of complaint for past problems? Hypnosis? Smashing stuff? Becoming a doctor?

But also, what do I do when I feel like I'm not being taken seriously, or that my treatment isn't effective? Honestly, I'm not one of those people who Googles "hiccups" and concludes that they have brain cancer. Should I always pursue second opinions? Get two GP's? I honestly don't know anymore. Help!
posted by unknowncommand to Health & Fitness (21 answers total) 4 users marked this as a favorite
Have all (or most) of these misdiagnoses come from the same doctor (or same pool of doctors at the same medical group)?
posted by scody at 9:15 AM on February 5, 2008

Response by poster: Some were university health clinics, at two different schools. One was at an emergency room. Some were my primary care providers at the time. A few were office-mates of the PCP's. Though the question does sound dramatic, the time span is actually over 15 years and 3 states. I really am healthy most of the time.
posted by unknowncommand at 9:31 AM on February 5, 2008

Maybe say it when you meet your MD. "I've had some dramatic mis-diagnosis in the past, and it makes me wary of the whole system." That lets the MD know that you want a little more time or you're not going to trust them, and that you might have a tenancy to present atypically. Maybe you could ask her to share her differential diagnosis with you, and to make the assessment and plan (including followup and when to conclude that you need to come back) very explicit. Just so you know, a differential diagnosis can be a terrible thing to behold. For example, if you have shortness of breath she will have to consider and exclude some Very Bad Things, like PE, heart disease, lung cancer, interstitial lung disease, and pneumonia.
posted by a robot made out of meat at 9:53 AM on February 5, 2008

Choose a new doctor that is well liked amongst friends and family.

When you have a problem be specific (not broad), use the pain scale (1 being the lowest, 10 being the highest), only give history on confirmed past illnesses, don't exaggerate, and never try to diagnose yourself.

If you disagree with the doctor, first ask him/her how she came to that conclusion and state your theories in a positive non-threatening way.

You might think you aren't doing anything wrong, but you might be saying things or being too broad about issues which can lead to confrontation.
posted by Schuby at 9:53 AM on February 5, 2008

I've had some luck by going to a holistically-minded doctor. Mine is offiicially a gynecologist but has training as an osteopath and is a libertarian to boot. I found him when I was volunteering as a translator for immigrants and checked him out more through word of mouth. He seems less likely than others to make a snap diagnosis and act like God.

But, in general, I identify the likely diagnosis through the internet, learn what tests are recommended, and then go to the doctor and compare what he or she says with what I just read on a reputable medical site. My research also helps me use the right vocabulary and clearly describe my symptoms.

And when the doctor's office calls to give me test results, I ask for the actual, numeric results and don't settle for reports like "normal" or "a little high." I then get online for more information, if necessary.

I'll sometimes go in and pick up the test report myself, especially after a doctor completely misreported my results. She told me that an ultrasound showed no growths on my ovaries, but actually the left one had a 6-cm growth, as I discovered when I picked up the pathologist's report myself. Usually, you just have to call ahead and give them time to call up and print the report.
posted by PatoPata at 10:07 AM on February 5, 2008

Best answer: It may just be really bad luck. But also think about how you're describing your symptoms. Is there anything that is a sort of common thread between how you percieved your symptoms and what the doctor expected? Is your tolerance for pain higher or lower than normal? Do you have difficulty identifying the exact location of pain?

I'm NOT intimating that the misdiagnoses are your fault at all. And IANAD. But I do know that sometimes diagnosing requires some art as well as some science. You may just need to keep looking for a GP that "gets" you, especially in regard to communication.
posted by desuetude at 10:11 AM on February 5, 2008

Best answer: Might it help to adjust your thinking about what role a doctor should be playing when you get sick? I think many times people have an attitude that visiting a doctor is a very passive experience: you go in, put yourself in their hands, and they fix you. However, having that sort of attitude makes it harder to speak up when something isn't working, or you are in pain, or don't understand why the doc is asking you to do something that sounds really wrong. When you say that you feel like I'm being pushy or demanding a particular diagnosis when things don't resolve on the first try, that sounds like you might need to re-frame how you think about your relationship with your doctor.

A doctor is just someone with a lot of professional training who you are hiring for a consultation and expertise, because you don't have the relevant training to solve a problem without guidance. (In some ways, that's not too different from hiring a lawyer when you have a legal problem.) As a trained professional, a doc can misdiagnose for a whole lot of reasons--maybe they're a bad doc, or maybe any doc would have made the wrong diagnosis because your symptoms all seemed to point that direction. To some extent, sickness and injury is all about chance, and I think it's a bit unrealistic to expect that the process of healing should not also be subject to chance--sometimes things get worse in an unpredictable way, sometimes even the best doctor wouldn't be able to figure out what the issue is.

I don't think the answer to your distrust is to write letters of complaint or to stop seeing doctors entirely. I think you should start applying the same critical-thinking filter to hiring a doctor (*particularly* a primary-care doctor) that you would when you hired any expert (lawyer, nanny, new roofer): does this person seem to grasp what I'm saying when I have a problem, or do they roll right over it and not seem to even hear what the problem is? When they advise me to take a course of action, does their reasoning hold up, or does it seem to contradict my experience with this before (e.g., if you come in complaining that it burns when you pee, and they keep insisting it must be a UTI even though this feels different from every UTI you've ever had)? If the outcome of that course of action is different from what they expected for any reason, what's the doc's reaction--try the same thing over again, or look for new clues and revisit whether the diagnosis is right?

If you don't really trust your doctor--not necessarily because he or she made a wrong diagnosis once or twice, but maybe because they don't ever seem to hear what you're saying, or aren't willing to consider new possibilities when the first course of action doesn't seem to be working--then you need a new doctor. Many people, when shopping for a new primary-care doc, make the first appointment to just come in, sit down, and talk with the doctor--that might be a good time to share some of your experiences with mis-diagnoses and ask the new doctor how they would have handled that, or ask them what their treatment philosophy is (are they pretty holistic, if that's important to you? Do they believe in doing a lot of screenings, or do they prefer to hold off on screenings unless you're at high risk for a particular disease? Are they comfortable with patients who ask a lot of questions and want reasons for particular courses of treatment, or do they prefer to have nurses in the office handle those sorts of questions?). I don't think a good doctor needs to have the best bedside manner or even be that "likeable," but you should on a gut level trust this person and feel comfortable asking them questions or letting them know that you don't think something is working. Keep looking until you find someone that you feel comfortable with and trust.
posted by iminurmefi at 10:25 AM on February 5, 2008 [1 favorite]

I would generally agree with previous comments, but would not suggest starting with "I've had some dramatic mis-diagnosis in the past ..." You don't want him/her to think of you as a potential law suit right at the start.

However, to show that you mean business bring in a written description of your symtpoms to leave with the doc. I've given docs spreadsheets and graphs showing body temperature (and other measures of the symptoms). My docs have always appreciated this "data" and it has helped with our working relationship.
posted by Kevin S at 10:26 AM on February 5, 2008

It's an industry now. Not a profession. When you have drug companies inventing things like fibromyalgia and restless leg stndrome, you have to expect some doctors are jumping on that profit bandwagon of fear-mongering and misdiagnosis. And now that healthcare is is so unaffordable to many people, doctirs now they have you where they want you. They know you (not you personally) probably can't afford second and third opinions.

Doctors are also under the pressure of soaking their patients so they can pay malpractice insurance (which as also skyrocketed).

Don't "get over" your distrust of them, because nowadays it's the correct attitude to have.
posted by Jay Reimenschneider at 11:36 AM on February 5, 2008

Well, you could try catching things that are easier to diagnose. Everything on your list is something that is famous for often being missed at first -- it usually takes quite a while to zero in on hypothyroidism, for example. Strep throat is more obvious, but is normally "confirmed" by a notoriously inaccurate quick test. Presumably after the first two or three occurrences you are sufficiently clued up to ask for the longer lab test.

I am with iminurmefi in thinking you may have to work on coming to terms with the fact that doctors cannot always achieve a quick fix. The chances are very low of one of them taking a look at your funny rash and saying "Ah yes, raspberries, growing in chalky soil on a south-east-facing slope, eaten with Ben and Jerry's cherry garcia ice cream 2 days and 16 hours ago". OK, so you weren't really expecting that, but a whole lot of things look alike to start with. Did any of these actually get as far as being given damagingly wrong drugs?
posted by Idcoytco at 11:46 AM on February 5, 2008

I feel your pain. Doctors have made serious blunders in diagnosing and treating me; an ophthalmologist in New Hampshire ordered me out of his office when I tried to insist that a detached retina ought to be ruled out by a more detailed exam after I got hit in the eye with a bungee cord and had a giant bloody welt on my eyeball and flashing lights in my peripheral vision. A month and a half and a couple of thousand miles later, a five-hour operation for a much worse outcome and a very difficult recovery (I now have a rubber band around that eyeball rather reminiscent of the bungee cord) was necessary to repair the detached retina which could have been repaired in a matter of minutes with a laser and an office visit and no more arduous recovery than waiting for the pupil dilation to wear off, if he had been more careful in the first place-- and that's not even the worst of the mistakes.

On the other hand, doctors have saved my life ten times, and I am profoundly grateful to them individually and as a whole; I can't think of my beloved baby doctor (doctor Schwab-- at least two saves) without tears coming to my eyes.

I think your problem is one of unreasonably high expectations and a feeling of entitlement. Medicine is so difficult. The demands it makes on a persons intelligence are almost insupportable in my opinion, and the demands on a doctor's character are even worse. If you and your doctor working together are able to solve some health problem of yours, that ought to amaze you, because the forces arrayed against the two of you are enormous and gaining power daily as you continue to age (if you're lucky).

I can almost guarantee you that your doctor comes into the treatment room with goodwill and a determination to see you well. You must find a way to match that, if you can.
posted by jamjam at 12:30 PM on February 5, 2008

Do your own research! Come into your visit knowledgeable about what your symptoms could indicate. Hit up the WEBMD symptom checker and wikipedia. Remember that you're the foremost expert on your own body; your doctor is a hired professional, not a magician or a clairvoyant (and if they act like they're either, you need a new doctor). S/he is there to help you, not scold you for questioning their almighty, all-knowing opinion. If you can walk in and have a two-sided conversation about your symptoms, you're gonna get better results.
posted by almostmanda at 12:39 PM on February 5, 2008

Response by poster: Thanks for all the suggestions. I should point out that I'm not necessarily blaming the doctors. I can fully deal with the fact that my biology (or choice of affliction) or communication style is a factor. It is just hard to deal with the prospects of going to the doctor (I'm sick right now, actually!). I thought I should be more specific, so I'll describe an instance:

I had a sore throat, I went to the doctor. The fast test said no strep. They told me to call for the slow test's results. Two days later, I had not received a call, and things had gotten progressively worse. The pain was terrible, and my soft palate was bulging, making it hard to talk. So I stopped by the office. They examined me and said, "Oh your slow test didn't indicate strep. It's probably just bad tonsillitis. Come back if it doesn't get better?" At which point I went to another doctor who said, "You have a peritonsillar abscess. Here are some antibiotics and steroids. If this happens again, please call me."

"Too Long Didn't Read", yes I know, and I'm not looking for a third diagnosis from the internet. But anyhow. Thanks again.
posted by unknowncommand at 12:55 PM on February 5, 2008

Response by poster: Oh, I really do appreciate the suggestions, though. Anything I can do to make this a better interaction would be awesome.
posted by unknowncommand at 1:28 PM on February 5, 2008

Best answer: There's a world of distance between a poor doctor and a good one and another distance between good and great. Unfortunately, finding a good practitioner can be hard. Don't be afraid to shop around and 'fire' people you feel aren't up to snuff.

If you're going into the encounter aware of your side of the responsibilities - being aware of your own issues, doing some basic research, and demanding sufficient attention - then you're ahead of a lot of people. I have a friend who I highly respect, but she walks into every medical encounter expecting the doc to do all the heavy lifting.

"He never even asked me about X!"
"If you wanted to talk about X why didn't you bring it up?"
"Well, he should just ask!"

I've read a lot of suggestions that you should write down the things you want to ask the doc about when you get into the session. The practice where I go now asks you to make some notes on a sheet you bring in, with one section for any prescription renewals you might need and another for the problems/things you want to discuss. They put the caveat on it they due to time constraints they might not necessary get to discuss everything but I have never had them shush me out before talking about everything on my list, so I suspect that's on there for people who might be asking a bit more than is reasonable to expect in a standard length appointment.

Point being, you can come in with your own list. Don't be afraid to take quick notes either. Any doc that has issue with either (particularly the notes that prevent you from calling the office later to ask about something you forgot) you can just kick to the curb.
posted by phearlez at 1:36 PM on February 5, 2008

unknowncommand--I might have misunderstood you before. Do you have a single primary care doctor? One person that would be the one you went to every time you got sick (barring something like being on a trip in another state)?

Your most recent story makes it sound like you might be bouncing around to different doctors or urgent care centers whenever something comes up. I think that dramatically increases the chances that you're interacting with someone who is more concerned about just figuring out the statistically most likely diagnosis ("it's probably just bad tonsillitis"--um, what?), and has crappy follow-up (like not sending you results from tests).

I'm not sure what your insurance situation is, but if there's any feasible way for you to find a primary care physician--and a lot of women use their OB/GYN, although I prefer an internist--and become a regular patient, that will probably make huge strides towards getting much better care. It's kind of a pain to do, because you really have to put in the effort to finding someone when you're not sick and can wait 4 weeks for a first appointment--but trust me, it's really worth it. The first step is calling up a bunch of doctors offices (hopefully ones recommended by coworkers or friends), asking them if they are accepting new patients, and then asking to make an appointment to see the doc. Some of the doctors that I've seen for the first time will do an appointment that only involves talking, while other doctors might want you to come in for something specific--in that case, you can set up a general physical (get some bloodwork done so they can test your cholesterol and glucose, that sort of thing).

I spent a lot of time as a kid bouncing around urgent care centers or whatever doctor's office happened to be open when I got sick, and there's no comparison in terms of the quality of care you receive with someone who knows you and your medical history.
posted by iminurmefi at 1:46 PM on February 5, 2008

I had a sore throat, I went to the doctor. The fast test said no strep. They told me to call for the slow test's results. Two days later, I had not received a call, and things had gotten progressively worse. The pain was terrible, and my soft palate was bulging, making it hard to talk. So I stopped by the office. They examined me and said, "Oh your slow test didn't indicate strep. It's probably just bad tonsillitis. Come back if it doesn't get better?" At which point I went to another doctor who said, "You have a peritonsillar abscess. Here are some antibiotics and steroids. If this happens again, please call me."

This could just have easily been you being happy you got antibiotics and steroids, from how you describe it. If you had a peritonsillar abscess, it would in general need to be drained. And in general, tonsillitis is viral, and gets better on its own. Your first two doctors may not have done anything wrong, you just feel they did something wrong. None of us know. By the time you saw the new doctor, you weren't getting better, and perhaps you DID have an abscess at that time that needed treatment.

I'd say this example is just as likely bad luck as it is doctor's mistakes. But you certainly did the right thing by going back in--or seeking a 2nd opinion--since you were getting worse.
posted by gramcracker at 3:49 PM on February 5, 2008

Best answer: I've had a couple of similar experiences recently. What's more, one of those was a misdiagnosis by someone who was, by all accounts and my own experience, a very knowledgeable and skillful specialist. It was just bad luck.

I recommend:
1. Try to ensure your GP or specialist knows what he's doing and/or gives a fuck. The doctor should ideally be recommended by a trusted source. You can also take steps, even as a layperson, to learn how a doctor might approach your symptoms, or what questions he might ask. Your knowledge will still be very limited, so you should not treat it as the sole basis for judgement, or as a path to hypochondria, or as a way to antagonize your doctor by telling him how to do his job, but it may help you form a more educated guess about your doctor's performance. Other things are common sense -- is there a rush to diagnose without proper examination or questioning?

2. For severe diagnoses, or diagnoses that suggest a treatment with potentially harmful or permanent side effects, seek a second opinion or extensive testing (if applicable).

3. If it still happens, it's bad luck. Buy a rabbit's foot, improve your feng shui, and say three Hail Mary's while doing the rain dance on one foot.
posted by Krrrlson at 5:51 PM on February 5, 2008

Between what I've learned from very knowledgeable nurses, and what I've read myself, I've taken to a new approach: I look stuff up myself.

I also try very consciously to make sure I know all of the symptoms I'm experiencing, and make a sort of mental list out of them. Then, when I go in to see a doctor, I say to the receiving nurse, "hi. I think I might have x." Then when I get to the doctor, "I'm experiencing a, b, c, and d, and I've had pain in my e for 7 days straight now."

I mean, I try to be a bit less super-direct than that, but I think they appreciate it. I get pretty good responses. They'll general go "hm", and do some tests, which is the only way to really know.

I worry occasionally about leading a doctor into a diagnosis, but medical school teaches them to be very strict about such things, so it's not like if I go in and say "hi! I think I have the bubonic plague!" they'll just take my word for it. Just lay out the situation, sincerely and professionally.

I think it subtly changes the whole doctor/patient dynamic when I approach it like that, too, which helps with trust. Doctors are not gods, but they'll take the lead if you don't -- they have to.
posted by blacklite at 7:24 PM on February 5, 2008

Oh, and the most important way to not worry about doctors: medicine is a lot of handwaving. Don't think to yourself, "oh, how can I trust them ever?" Just realize that you are going to have to put some effort in yourself until or unless you find someone you do eventually trust completely. With everyone you're unsure of, if you take part of the responsibility into your own hands, it's no longer a trust situation -- it's a consultation. Evaluate doctors on their merits, not the letters after their name.
posted by blacklite at 7:29 PM on February 5, 2008

The emergency room is NOT for diagnosis, it's for ensuring that you don't die, so they can go help someone else not die.

They're great, but never depend on them for an accurate diagnosis--see someone who has more time, and can take a more thorough medical history.

Hope that helps.
posted by sondrialiac at 3:38 PM on February 6, 2008

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