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Misdiagnosed, too.

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  • Misdiagnosed, too.

    I am glad to see the possibility of misdiagnosis being addressed so honestly. I was diagnosed (and undiagnosed) with MS several times. I was thought to have NMOSD for a while. Was on a DMD for some time, but they took it back and don't really know what I have. It's likely much more common than we are led to believe.

    And in my case, at least, un-diagnosis came with a huge helping of gaslighting to protect the egos that were at risk of damage thanks to my inconvenient failure to remain in the box where I'd been placed. Wishing all well.

  • #2
    I get it. I am in the, "Is it MS or is it neuro-Lyme or is it both" all the time. I was bitten and had the rash in 2015 but had optic neuritis in 2013. So???


    • #3
      It's very difficult to be in "limbo."

      MS is diagnosed by neurological "lesions separated in time and space" that are not explained by another diagnosis. That is, more than one neuro symptom in more than one place. If you had one episode of optic neuritis and a concurrent brain MRI showed another "old" lesion as well consistent with MS (which episode may or may not have been symptomatic), your doctor might make the diagnosis of MS, presuming there is no other explanation.

      If you also had a later separate episode of documented Lyme that has resolved, and you had an otherwise normal MRI at the time of optic neuritis, you might be diagnosed as CIS, or "clinically isolated syndrome" which is your one episode of optic neuritis but an otherwise normal MRI, and no other historical or lab evidence (maybe oligoclonal bands in your spinal fluid?) to suggest MS or another clinical diagnosis.

      I was diagnosed with MS clinically before MRI was in widespread use, when I had two separate episodes of optic neuritis, one in each eye, diagnosed by a neuro-ophthalmologist to whom my concerned ophthalmologist quickly referred me because he suspected it was MS. I declined a spinal tap when I had the first episode of ON, because the problem went away and I didn't want to have a needle stuck in my back. There wasn't any treatment available back then (late 1970's - early 1980's) anyway, so why bother?

      If you have CIS (diagnosed by your one episode of ON) and a normal MRI and no other relevant neuro symptoms, the likelihood of developing MS is fairly low, "only" about 20%.

      I wish you all the best.


      • #4
        Renfield.....thank you for your answer.

        I've had multiple MRIs - all with additional lesions. I also have symptoms - tremors, fatigue, balance, etc. I've also had a spinal tap with bands.


        • #5
          I'm sorry your situation is so difficult. It's definitely not CIS.

          Doctors like to make a diagnosis too, so limbo also frustrates them, but you are the one stuck with the symptoms and living with uncertainty. It can be hard to diagnose either MS or Lyme, and because of that plus continuing changes and advances in medicine, I am sure that many cases of both diseases are currently undiagnosed.

          I went formally undiagnosed for over 20 years because there was no good treatment, I was clinically doing well with no disability since all my relapses resolved quickly and completely, and I did not care to get labeled with a bad diagnosis and endure a lot of discrimination. But at least I knew what was wrong, I just moved away and got a new job and new doctors and never mentioned MS.