You Misdiagnosed Me…

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Sometimes finding the right diagnosis is a process. The horses must be ruled out before we can go looking for the zebras. Or, maybe you are not far enough in the disease process to present the right symptom clues.

Do you know how many things can cause fatigue?!?!?

We do our best. No physician wants to miss something. 

Call it pride if you like. We want you better because we don’t like to watch you suffer but also because it makes us look good.

We don’t have a crystal ball. 

Personally, I would pay through the nose if you have a lead on a good one…

Sometimes we get it wrong. 

We are imperfect humans, after all.

That does not mean we don’t care.

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99 thoughts on “You Misdiagnosed Me…

  1. By the time I get to my dr appt, the symptoms have gone, but if I cancel, they’ll charge me anyway, because it’s too late. So, there I am, feeling like an idiot, describing what I don’t have anymore.

    Liked by 3 people

      • Yeah, if it’s less than 24 hours notice, they charge me.

        It’s as if the problem is sentient, and hides, so the dr can’t get rid of it! I’ve had the same problem come back, a week after the appt!

        Like

  2. One of the very difficult things patients have to do, assuming they are paying attention at all, is to distinguish whether their doctor is working through a diagnostic process, fishing for something good, blowing smoke, padding the invoice, playing CYA, Retired On Active Duty, or whatever. Of course, a key element in that judgement is getting to know the doctor, a process made much more difficult by the corporate medicine push for ever greater efficiency and ever fewer minutes spent with the patient. Wouldn’t it be interesting to know if there is an inverse correlation between the number of minutes spent with the patient and the number of hours spent on litigation?

    Liked by 6 people

    • That would be a fascinating study! I think that many patients assume the worst possible motives from physicians. And maybe there are a ton of really awful ones out there. From my standpoint, I appreciate having a patient ask me if something is necessary and what we hope to gain from the test.

      Liked by 3 people

      • Hmmm. The number of patients expecting the worst from their physician. A longitudinal study on that would be pretty interesting, too. I don’t know about there being a ton of awful physicians out there, but there are surely more physicians who have issues with their employment than there were in the days when most physicians were self-employed. How many of those physicians can prevent their employment issues from leaking into their patient interactions, and what does that do to their patient relationships? Especially when the corporate rules make it increasingly hard to have much of a relationship.

        Liked by 5 people

  3. I’ve been misdiagnosed a few times. I understand that it is an art, not a math project. that there aren’t really always the right answer or the right treatment. Trial and error. But my doctors have always been upfront with me — because you’re right — they don’t want to see me suffer, they want to be right and brilliant.

    But one doctor was truly horrible. She misdiagnosed me with advanced Ovarian cancer (I actually had cysts) and told me to “get my things in order.” She was totally flippant the way she described it (“Well,” she said, “you get these cancer cysts and the !POP! and the cancer cells float around the area and then you’re dead.” When I asked about surgery she actually said, “Oh, Elyse. You’ve had so much surgery that no surgeon on the east coast would be able to tell your liver from your spleen.” It was 11 years ago, and I’m still mad at her.

    Liked by 6 people

  4. I was misdiagnosed once. And I certainly didn’t blame my doctor. He’s still my doctor. He could only go on what I was presenting and describing. And everything he said and did made sense to me. I appreciate what kind of pressure this is. And I know/knew my doctor and his staff care.

    Liked by 2 people

    • I completely understand when a physician is rude and awful. You should go find someone else. I have so many people change providers midstream in their work up simply because the physician did not get it on the first guess. You know what makes it easier for the next doctor to get it right? The fact that the other doctor did those other tests before or because now a patient is showing new symptoms. I get tired of explaining this sometimes. I get tired of hearing how bad other doctors are (physicians that I know are wonderful and caring and thorough). Probably there are people out there saying this about me, too. Their old physician would have gotten it right now if they had just stuck it out to complete the work up!

      Liked by 3 people

      • I hope that this is usually the case. It unequivocally was not so in my own cancer experience, though I certainly did no complaining; I was busy being gratified for being sent for the required tests after a year (!) of symptoms. (The first specialist had been pleasant enough, but I should have got a hint when she mentioned she was considering switching to Law. And btw, she also taught this specialty. Human? Yes. Scary? Yes.

        Liked by 1 person

      • If you bring up the fact you have ongoing issues and are being ignored, that is time to find someone else for sure! When patients don’t give feedback in the first place about ongoing symptoms it is impossible to help them.

        Liked by 1 person

      • Not so much that issues ignored; the ongoing issues seemed to have been judged by the doctor as being within the range of normal, i.e., not pathological. In my case, it was literally “accidental” that I saw another specialist; the first doctor’s office hours clashed with the hours of a course of study I began. The day of my first appointment with the new doctor I was there for several hours, immediately being sent to lab for several tests. The next time was similar: he said something to the effect of, No, this is just not what ought to be happening / we ought to be seeing if all were “normal”. Of course, it was “helpful” to his ultimate diagnosis that the symptoms had lasted as long as they had, and were still not responding to the last tertiary treatment (progesterone) prescribed earlier. And then, this second doctor had many more years of experience under his belt; his intuition was as valued by him as his book knowledge—and he was never in a hurry (with him it was like, to hell with the appointment schedule, I take the time I need to shed as much light as is available to me on each issue). You came to your appointment fully expecting to wait for hours—with true appreciation of what you are waiting for. This seems a bit rare “these days” . . . I owe that brilliant, focused, gentle doctor my life. (And subsequent medical professionals as well.) Life is so strange, don’t you think? Do “accidents” even exist? I wonder about such things sometimes.
        Sorry for talking so long, Victo! 🙂 Thanks for hearing me out. Enjoy the rest of the warm weather; be well.
        Christine

        Liked by 1 person

      • I’ve been seriously lucky with my doctors. My PCP has never ever been rude or out of place. And I couldn’t fault him for how my pain presented. My shoulder hurt horribly and that’s what I kept presenting to him. It turned out to be a neck injury, but it was only diagnosed BECAUSE he kept trying to figure out what was wrong. It’s sad you have to keep explaining these things to people. It makes complete sense to me. Doctors are people too daggone it! 😉

        Liked by 1 person

  5. Let’s play devil’s advocate here…how about the docs who let their patients diagnose themselves (for whatever reason) through Google/Web MD and the like then seem to take that Dx at face value, hand the patient an Rx and shuffle the next one in?
    Thoughts on how often this happens?

    Liked by 2 people

  6. I’ve occasionally gone the internet route to try to find out what’s ailing me. You’re right, there are probably a million causes of fatigue, and vague symptoms like that. I generally end up shaking my head, feeling confused. I can see why diagnosing can be such a difficult challenge.

    Liked by 1 person

  7. I was obstinately misdiagnosed with bi-polar illness for years. I took every medication available and none of them worked because I didn’t have bi-polar illness. My symptoms are really the standard issue symptoms that people with trauma histories have. In other words, they’re obvious, hard to miss, would be noticed by even the most mediocre drop out from an abnormal psych course.

    I think medical doctors are different from Psychiatrists. I know that people are people, and that doctors are human. But it looks to me as if MD’s are more inclined to act on the awareness that their decisions affect not only the quality of their patient’s lives, but the quality of their deaths as well.

    I think that if psychiatrists really understood their responsibilities they would be lobbying congress to re-fund long term hospitals rather than complacently accepting the fact that their patients wind up homeless or in prison.

    Maybe I’m wrong…

    I’ve said this before; you seem exceptional.

    Liked by 5 people

    • I thought very long and hard about psychiatry as a specialty. I was so close. I love, love, love working with the terribly mentally ill. What kept me from it was what you describe. The profession is littered with people who just don’t care. I have seen too many patients labelled as bipolar when that was not even the issue at all. That is another post for another time! 🙂 Thank you for your kind words.

      Liked by 5 people

    • I think mental issues are even harder to diagnose. There are so many gray areas. Now, I also know that what you are describing is rampant as well, that despite obvious symptoms of “X” the psychiatrist will diagnose “Y” after a 20 minute consult, because “Y” is their easiest go-to. I’ve had more bad experiences with mental health professionals than with physical health ones (there I go into that Descartian duality I was on about the other day).

      Liked by 3 people

      • And patients in the U.S. need to force the behavioral health system to comply with Federal Law and provide us with true parity with medical treatments.

        Can you imagine the outrage if hospitals arbitrarily discharged Alzheimer’s patients to the streets with no where to go. T

        here is no difference between Alzheimer’s and other serious brain disorders. Alzheimer’s disease is in the DSM-V. But because people can imagine it happening to them there is no stigma attached to it and Alzheimer’s patients get medical parity.

        But imagine a world in which Alzheimer’s patients are treated with the same callous disregard and young people with Schizophrenia.

        Liked by 4 people

      • To Robert’s remark: Imagine the outrage if people with diagnosed severe sleep disorders were left hanging without access to their (known efficacious) treatments… Oh wait. That already happens. (Sorry for changing the subject, sorta-kinda changing it anyway, but I’m grumpy today. No doubt from lack of sleep.)

        Liked by 1 person

    • My husband runs a 90 day program for homeless men where I volunteer. What we’ve seen is that mental illness is a primary contributor to homelessness for most of the residents, and adequate resources are very hard to come by. You have to be currently dangerous to get inpatient treatment. You are right, Robert, about this and the bipolar diagnosis. I can’t believe it’s really increased as much as the diagnoses have over the past 10 years.

      Liked by 3 people

      • exactly–I think that the reason ‘behavioral health’ is skeptical if trauma related disorders is that none of its skewed ‘evidenced based’ treatments work for PTSD and DID. CBT and DBT are great tools, the idea that you can cure complex lifelong problems in cheap groups is laughable and tragic for those of us who are oppressed by it. “Behavioral Health” is a formulation based on a stigma against mental illnesses. It needs to be said and repeated everywhere. The most bigoted people we interact with are the people who say they want to treat us.

        Liked by 3 people

  8. Whew – diagnosing, now there’s a subject on which to pontificate.I can tell you stories that stretch all the way from brilliant to unprofessional. I would say that the biggest problem is as Daveb42 mentioned – time and patient knowledge. As a dialysis patient with a colostomy, I have become very sensitive to changes in my body and can catch a lot of related or typical problems long before a doc would ever be able to diagnose the issue. That works fine for typical problems – but still leaves the non-typical issues. For instance high phosphate levels are immediately detectable by skin itchiness that disappears after a shower. High potassium creates a lightness in the chest that seems to flip,over and leave a feeling of peace. Low hemoglobin causes fatigue even after a good sleep. (Most anything will cause fatigue prior to a good sleep).

    I can list a number of bad diagnoses that all shared the same cause – lack of time with patient and knowledge of what constitutes a baseline for a particular patient (like machinery, patients come with personal norms for example, with higher or lower blood pressures, etc) There is one particular mis-diagnosis that I would share with medical students if I ever had the chance. I had had colon cancer and it had been gone for 5 years. I was having an ultra sound of my abdomen and bladder done in preparation for a kidney transplant ( a long process involving many tests – some of which are designed to establish if any cancer is present). The doctor who read the ultrasound saw a number of clumps of cells and read it as cancer. (I later saw my urologist who had a CT scan run and he told me everything was normal and that it was typical for patients over 50 to have clusters of benign cells in their UT organs) He told me straight up without any questions or suggestions : “Your cancer is back.”And he left. I was traumatized and honestly Victo was seriously figuring out the best way to commit suicide because I was not going to go through the treatment again. I was already depressed because I had lost a long term relationship, my job, my home, any and all savings I had, my mobility, etc.. … It just so happened that I had an appointment already scheduled with my urologist and he talked me down. That was a fluke – that I had an appt before I managed to commit suicide. Had that not been the case, I would not be here now. That was years ago and I’m fine now but I still shudder when I recall how flippant and sure the doc was. Granted those with a history of cancer need to be watched more carefully for a recurrence – but that doctor’s mis-diagnosis was so terrible as to be almost criminal. I never saw him again.

    Anyway, that is the exception not the rule Victo. Most diagnoses are a matter of accumulating test results and symptoms, ruling out causes as the process goes along. Anyone with more than a passing experience with medicine is aware of that. Which of course leaves those who want a fast answer that is 100% and treatable with a pill. And everyone lives happily ever after. 😀

    Liked by 3 people

    • You are a professional patient to be sure, and I don’t mean that in a derogatory way. It means you have learned medical school the hard way. I think a lot of people have misperceptions about medicine and its limitations, as you say, unrealistic expectations.

      Liked by 1 person

  9. That reminded me of the time I went to see a new doctor for my growing joint pain. He came highly recommended and had been listed the summer before as one of the top 3 rheumatologists in the state. After our initial interview, he stated that while my symptoms clearly indicated some form of rheumatic disease, it was important to do everything we could to narrow that down, as treatment varied for each. One of the things he zeroed in on was the spastic colon (now called IBS) I was treated for when in the military decades earlier. Since I was over 50 anyway, he sent me for a colonoscopy to rule out ulcerative colitis.

    Three months later, at my next appointment, he reviewed the negative findings from my colonoscopy and started me on some different arthritis drugs, since I hadn’t responded to the previous ones he’d given me. At our next appointment after that (now six months after the colonoscopy), he began our interview by asking how my ulcerative colitis symptoms were doing. I was a little unsure of just what to say, so I simply told him that I don’t have ulcerative colitis.

    “Who told you that you don’t have ulcerative colitis?” he asked…loudly.
    “The doctor you sent me to for the colonoscopy,” I responded.
    He grabbed up my paper file and started tearing through it. “Then why does it say in here that you DO have ulcerative colitis?” the doctor thundered.
    “I’m sure I don’t know.”
    “Well, what idiot told you that you did?”
    “No one, doctor. You sent me to a specialist to have a colonoscopy to rule out ulcerative colitis. He did that.” At that point the doctor ended the interview and told me to continue on my current medication and come back in six months. Two weeks later I had an appointment with ANOTHER rheumatologist. He wasn’t as famous, but he had a much a better bedside manner…

    Liked by 3 people

  10. So many good comments. As an LMT I could not diagnose (though many of my peers forgot that little tidbit), which makes things interesting. Especially when it was things like lymphedema, which was a specialty and the doctor only had 5 minutes of it once, decades ago…

    But I’m really thinking about the tv show House, here. The whole premise was that he was this great diagnostician. I always thought he was the scariest dude in the room! He had his moments, but he’d just proclaim “it is this!” and start down a course of (usually horrifically detrimental) treatment, and he’d do it over and over. Yet everyone in his fictional world kept up the ruse and we, as an audience bought into “brilliant” as opposed to “smart, loose cannon who shouldn’t be near a patient.”

    Liked by 1 person

    • TV does that Laura – I agree with you. My career was in trucking and when I see the trucking shows on TV, I’d fire every one of the careless, unprofessional, thoughtless stupid drivers they show as “Typical”. I’d also fire their bosses for focusing on all the wrong things and not providing sufficient or suitable training. They wouldn’t last 10 minutes in the transportation environment in the real world. They’d be followed by an insurance inspector and would be denied insurance for their repeated shenanigans and transgressions and aggressive driving attitude (which apparently makes good TV but in reality kills people). Their bosses would be behind bars. In the real world whenever there is an accident – investigators pour over records and interview employees and assess training programs and disciplinary programs. Even though the law does not itemize every action required to operate safely, there is umbrella legislation called “Due Diligence” that stipulates that all reasonable care must be taken in the training and guidance programs so as to provide a safe and healthy driver culture that is informed by training. Any indication of pressure that encourages drivers to rush and ignore safety in order to produce or meet targets will result in jail time for the bosses and/or owners. Or as the owner of the company I last worked for used to say: If I go to prison, you’re coming too and I get the upper bunk.

      Liked by 3 people

  11. I wrote a long story about a current problem we have faced with my little sister, temporary paralysis, and non-answers from doctors. It came off really accusatory, and obviously I know doctors are people. I guess it all boils down to, from a patient’s perspective, we feel like we are beholden to those with the knowledge that can aid us. In this country, we pay through the nose for an unjust system that satisfies very few. When we are so vulnerable, and bled dry, it is frustrating (to put it lightly) to get an incorrect or non-answer.

    Liked by 1 person

    • You are absolutely correct! Some of the issue with this behavior is economic. But that is the very reason all of the possible tests that can be done should not be ordered straight out of the box. No one can afford that. Too expensive. It is a process to rule things out but asking someone who is suffering to be patient is not going to go over well either.

      Like

  12. The only reason I would ever want to be a doctor would be to diagnose illness. I love the mystery of it. I think it is fascinating. I love when I try and get it right. (which I do a lot)
    One thing I have to mention is the challenge of comorbidities. Now, having said that,….it pisses me off completely when a doctor looks at me, listens to my list of EDUCATED symptoms, and then says, lose weight, “you’re FAT!” End of appointment. This kind of thinking almost killed me once and permanently cause damage to my joints. The diagnosis for one was Factor V Leiden which tossed up several clots, that fortunately disappeared and is inherited. Four of my SKINNY family members have it. The other misdiagnosis was Psoriatic Arthritis. Neither item was anything to fool around with, but everyone was convinced that I was JUST Fat!
    And I agree: always self-advocate for a solution.

    Liked by 1 person

  13. I know someone who is a specialist nurse – you know, like she/he only works on ingrown toenails – but he/she can diagnose anything in any person and also knows that any specialist I have ever been to is no good and there is someone better. I think I like your approach just a tad better.

    Liked by 1 person

  14. Did you have a bad day at the office? Of course it would be nice if someone could tell you right away what’s wrong with you and pull out a cure right away. But we don’t live in a movie. It’s the real life. And doctors are people too (as you said), no superpowers…

    Liked by 1 person

  15. Yep Doc, I had a negative straight leg raise and no low back pain with the burning in my lower leg – xray, therapy, muscle relaxants, and anti-inflammatories for 3 months. THEN the pain became chronic and the MRI showed an annular tear.

    I also know that my Insurance carrier would have denied an MRI if ordered originally and billed me the $1500. PT didn’t hurt and I didn’t have the headache of multiple calls to a carrier about a MRI bill.
    People need to see the whole picture.

    Liked by 1 person

  16. Isn’t it called “practicing” medicine? I understand the results are serious. I’m a web copywriter. If I mess up, we take down a web page. If you do … well, you know.

    I love and trust my physician. Because she’s perfect? Nope. Because she cares to do her best. We need to trust a little more.

    Liked by 1 person

  17. Amen. Diagnosing is difficult. I used that “horses/zebras” analogy with a friend recently. Her husband’s upper eyelid had been puffy and his doctor tried all the usual stuff (prednisone drops, etc.) and it still didn’t go away. The husband saw an ophthalmologist who sent him for an MRI. There was a growth that was biopsied and it turned out to be sarcoidosis—an unusual diagnosis for someone who’s male and over 60. But there you go. I told my friend that doctors say when you hear hoofbeats you think of horses, not zebras…but this time it did turn out to be zebras!

    Liked by 1 person

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