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MS Limbo Still Better than Misdiagnosed MS

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    MS Limbo Still Better than Misdiagnosed MS

    In addition to being a common problem, misdiagnosis of multiple sclerosis (MS) exposed patients to unnecessary and potentially harmful treatments, as well as inadequate treatment for their correct diagnoses, concluded a study presented at the 2016 annual meeting of the American Academy of Neurology (AAN).




    “Misdiagnosis of MS is not rare and has significant consequences for patients,” study investigator Andrew J. Solomon, MD, of the University of Vermont College of Medicine, in Burlington, Vermont, said in an interview. “Although it may not be possible to eliminate diagnostic error in the evaluation of patients for MS, strict adherence and conservative application of MS clinical and corresponding radiographic diagnostic criteria and education concerning proper use of MS diagnostic criteria may prevent misdiagnosis.”


    Dr Solomon noted that data are lacking on the types of diagnoses frequently mistaken for MS, as well as for the reasons for misdiagnosis, hampering the ability of physicians to develop strategies for the prevention of this problem.

    “The few prior studies of large groups of patients misdiagnosed with MS were published 20 years ago or longer,” Dr. Solomon said. “The types of diseases mistaken for MS, and reasons for misdiagnosis, have likely changed along with the evolution of our diagnostic criteria and the increasing reliance on the interpretation of [magnetic resonance imaging (MRI)] data.”

    To better characterize patients misdiagnosed with MS and to determine common misdiagnosis causes, Dr Solomon and colleagues culled data from 4 academic MS centers submitted during a 13-month period regarding patients whom the neurologist had evaluated and concluded had been misdiagnosed with MS.

    Among 110 patients misdiagnosed with MS, 46% had “definite” misdiagnosis and 54% had
    “probable” misdiagnosis, according to study definitions.

    Researchers reported the following most common primary diagnoses: migraine alone or in combination with other diagnoses (21%); fibromyalgia (15%); nonspecific or nonlocalizing neurologicl symptoms with abnormal MRI (12%); and conversion or psychogenic disorder (11%). They also reported 27 additional diagnoses.

    The time for carrying a misdiagnosis was 3 to 9 years in 29% of patients and 10 to 20 years in 26% of patients.

    Overall, 70% of patients had taken disease-modifying therapy such as natalizumab (13%), mitoxantrone (2%), and cyclophosphamide (1%), while 4% had participated in a study of an MS therapy.

    Participating neurologists reported evidence of an earlier missed opportunity to make a correct
    diagnosis in 72% of patients, and 31% of patients experienced unnecessary morbidity as a result of a misdiagnosis.

    Additional observations indicated 3 factors that contributed to misdiagnoses: inappropriate attribution of symptoms to demyelinating disease (65%); reliance on historical symptoms without supporting objective evidence of a lesion (48%); and over-reliance on MRI abnormalities to satisfy dissemination in space among patients with nonspecific neurologic symptoms (60%).

    “Although a large number of diseases may be mistaken for MS, the majority of disorders that we identified in this cohort … were common disorders,” Dr Solomon said. “The correct diagnoses in many of these cases are reliant upon clinical skills and correct interpretation of MS diagnostic criteria, rather than extensive testing.”

    Dr Solomon noted that further clinical and radiographic monitoring may be most prudent in patients with atypical clinical presentations and/or with nonspecific MRI abnormalities, as new data may confirm a diagnosis of MS or an alternative diagnosis.

    “Such an approach can seem difficult in light of mounting evidence supporting early initiation of [disease-modifying therapies] in patients with MS or at high risk for the development of MS,” he said.“Continued vigilance for ‘red flags' for alternative diagnoses in patients with existing diagnoses of MS also remains important, especially in those with atypical clinical or radiographic features.”




    http://www.neurologyadvisor.com/aan-...rticle/490313/

    #2
    This remains a concern for me. I really want to know for sure, so I am getting a second opinion. I really don't want to take the wrong medication.

    Comment


      #3
      So scary. Three neuros, two specialists have said MS. Just hope they are right.

      Hoping advances in biomarkers and 3D MRI will reduce/eliminate the issue.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by pennstater View Post
        So scary. Three neuros, two specialists have said MS. Just hope they are right.

        Hoping advances in biomarkers and 3D MRI will reduce/eliminate the issue.
        I second that. When I was in the process of being diagnosed, the MRI was a classic but my cousin, who is a nurse, said, "MS is the most misdiagnosed illness there is".

        For 2 months I clung to the hope that it wasn't really MS.

        So much could be answered if and when the MRI technology can show more.

        Comment


          #5
          Originally posted by Marco View Post

          Participating neurologists reported evidence of an earlier missed opportunity to make a correct
          diagnosis in 72% of patients, and 31% of patients experienced unnecessary morbidity as a result of a misdiagnosis.

          http://www.neurologyadvisor.com/aan-...rticle/490313/
          Hey Marco,

          This paragraph was the "scariest" to me. "Missed opportunity" and "unnecessary morbidity" that does give one pause.

          A very interesting read on Wheelchair Kamikaze blog is called the Misdiagnosis of MS. (if you scroll down the title is on the left it's listed under "MS info posts".) In short, he has the same lesion for his entire MS journey, yet continuing, debilitating, progression. He's been seen by the best doctors, and the diagnosis that comes the closest to what he's experiencing is MS, so they call
          his diagnosis MS, even though it's anything but typical.

          I've often wondered about my diagnosis in that I seem to have one large lesion that causes all
          the problems, and the smaller scattered ones don't yell MS, just this one lesion which all my neuros through the years (MS specialist and otherwise) say it's MS. I have plenty of signs and symptoms of the disease. And now that I don't use a DMD anymore, I'd say, "What does it matter what name
          it has?" I'd still have to take symptomatic meds, I'd still need my baclofen pump to help with spasticity, so what does it matter what (whatever I have) it is.

          But after reading those statistics in the article, I'd say it does make a difference.

          Thanks for posting the article.

          Comment

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