Research: Misdiagnosis in MS


Methods: A cross-sectional Internet-based physician survey of MS specialists was performed.

Results: The
response rate for the survey was 50.4%. Of those who responded, the
majority (95%) reported having evaluated 1 or more
patients who had been diagnosed with MS, but who
they strongly felt did not have MS, within the last year. The majority
respondents (>90%) also reported the use of
disease-modifying therapy in a proportion of these patients. Most
(94%) found clinical encounters with these
patients equally or more challenging than giving a new diagnosis of MS.
percent of respondents reported that they did
not always inform such patients of their opinion that they did not have

Conclusions: The
misdiagnosis of MS is common and has significant consequences for
patient care and health care system costs. Caring for
a patient with a misdiagnosis of MS is
challenging, and at times honest disclosure of a misdiagnosis represents
an important
ethical concern for neurologists. More data are
needed on this patient population to improve diagnostic acumen and the
of these patients. 

the survey results, they emphasized the following:
1) nearly all MS specialists who completed the
survey had seen patients in the prior year for whom they thought an MS
was incorrect; 2) many of the MSers with an
incorrect MS diagnosis were actually taking MS disease-modifying drugs
3) many MS specialists found it difficult to “take
away” the MS diagnosis; and 4) the MS specialists decided, in some
not to inform the patient about their opinion. 

The suspect diagnosis was commonly
on non-specific MRI changes, sometimes occurring in
patients who had cardiovascular risk factors or migraine. The authors
attention to the difficulty neurologists reported
reversing an incorrect diagnosis. The
suggest over-reliance on MRI to make a diagnosis,
inappropriate use of DMD, and the difficulty neurologists have dealing
MS misdiagnosis.

You can see some of the financial cost of misdiagnosis above and the human cost of misdiagnosis below.

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  • Why do doctors find it difficult to say it was a misdiagnosis? 'You dont have MS' will be great news for most patients

  • On the other hand being told you have a neurodegenerative condition for which there is currently no treatment wouldn't be such great news.

  • Re: "Why do doctors find it difficult to say it was a misdiagnosis? 'You dont have MS' will be great news for most patients!"

    Yes and No! Some people want a disease and shop around for it; it is part of the condition we call somatization disorder. Other do it for secondary gain, i.e. malingerers. Both there groups don't want to be undiagnosed!

  • Re: 'You dont have MS' will be great news for most patients!"

    I don't think most people *want* a diagnosis of MS, but if you know something is wrong with your body and you're then told "We don't know what's wrong with you" or "We think you're making this up" then you probably don't feel too happy and reassured. As MD2 points out, many of the alternative diagnoses are worse. At least MS is a name and there are semi-effective treatments. Plus, if you do have MS and it takes a long time to get diagnosed, you're presumably missing your window of therapeutic opportunity. I wonder how many people in the "medically unexplained" category on the other post just haven't had the right tests run or just need more time before something shows up that is detectable with current tests.

  • (from Anon 15 May again) I didn't read the post carefully enough first time. I thought it's saying doctors hesitate to change the diagnosis from MS to migraine.

    Quite agree that even non-malingerers would prefer an MS diagnosis MS over something unknown or untreatable or rapidly degenerative

  • (anon 3:34 again)
    That's fair and I've probably gotten off track. It does says that doctors hesitate to tell someone who's been diagnosed with MS that they really have nothing or something else like migraines. Why would neuros think that patients will react negatively to the news that they don't have MS, but instead have migraines?

    Well, it's kind of a downgrade. I don't think (unlike some neuros) that there are hordes of people walking around wanting to be diagnosed with MS, but in a perverse way MS has more cachet. People around you probably don't take migraines as seriously. MS gets more respect. That's the cynical take.

    Plus it's probably a shock to have adjusted to a diagnosis of MS and then have it yanked out from under you. Shocked patients are not usually happy patients.

    Presumably if the patient got so far as to have an MRI and get diagnosed with MS, they were having symptoms beyond what they expected to be explained by migraines. So now they're still left with the symptoms, but not with what seems like a satisfactory explanation, especially if treatment isn't working for the migraines. To further confuse things, apparently there are atypical migraines that don't cause headaches per se, but can cause neurological symptoms like tingling, numbness, and weakness.

    Complicating matters more, migraines and MS are not mutually exclusive. In fact research suggests that migraines are more common in people with MS ( and even maybe that women with migraines are slightly more likely to get MS (

    I suppose I am suspicious of a survey of neuros as an accurate way to get at the bottom of the problem of misdiagnosis since my experience of neuros, even MS specialists, has not been overwhelmingly confidence inspiring. Without an autopsy or biopsy, who really knows for sure who has MS? Maybe the first neuro was right and the second wrong? On a patient website I'm on, it's easy to get the impression that a lot of neuros won't diagnose anything except textbook cases of MS (then again you also get the people who are convinced that they have MS because they have "all the symptoms of MS"). Now perhaps the MRI weighs too much and people get diagnosed on suspicious MRIs alone while people who would've have been clinically diagnosed with MS in a previous era go without a diagnosis due to lack of the right MRI evidence. We really need biomarkers.

    Probably my response to this article is unduly colored by my own experiences. When my first MRIs were all normal, I was told that I didn't have MS and I was happy. Six years later neuro #3 did more tests and concluded that I did have MS. Even then things could have gone wrong. I don't have a lot of brain lesions (probably not enough for a diagnosis on their own? "minimal" but "consistent with MS" say the later reports). The radiologist actually read my brain MRI as normal (although the neuro thought that was a definite fail). I was only diagnosed because the neuro ordered other tests. Sometimes I am still not confident I really have MS, but *something* is definitely wrong with my CNS.

  • (anon 3:34 yet again)
    FWIW, my own experience with misdiagnosis was in the opposite direction. I had been told I didn't have MS; I had something else. When I had the test that led the neuro to say that I had MS or something like it, it came out of the blue. I experienced a strange mixture of shock, euphoria and freak out. Mostly I was in shock. The neuro had to go to a meeting (it wasn't a regular appointment time) and didn't have time to discuss anything other than to tell me to go get MRI's, but I was too discombobulated and caught off guard to come up with questions anyway. Euphoria might seem like an odd reaction, but I suddenly felt like I might be getting closer to an answer that made sense. I hadn't doubted the previous diagnosis (I used to think doctors were a lot less fallible than I do now), but I had a lot of trouble reconciling what I was experiencing with what I read about that condition. The freaking out was because everything suddenly seemed much more serious than I had been led to believe.

    On the other hand, the people I know (virtually) who have had a new neuro take away their MS diagnosis generally seem to have felt dismissed and abandoned. They usually still believed that they had MS. Or at least they still had doubts. Since they couldn't immediately believe the good news, they were not instantly happy. In fact, most of them probably reacted negatively to the news. So I imagine that's one reason neuros don't like to tell patients that they don't have MS after all.

    Sorry to keep going on about this. I'm not sure why this article bothers me so much. It's not that I don't think people are misdiagnosed. It's not even that I think there are no people who are mistakenly convinced that they have MS and are pushy with doctors about it. Maybe it's that I just don't have confidence in neuros, even MS specialists, to get this right. Or not enough confidence that they won't just dismiss patients, especially women, as whiny attention-seekers. So a survey seems the wrong instrument to me. Anyway, I'll shut up now.

  • Re: "That's fair and I've probably gotten off track."

    This is a very insightful post! A lot of the points you mention have been covered in previous posts on this blog. The number of posts is now over a 1000 so it is not easy to get to them quickly.

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