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New to this World of Limbo

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    New to this World of Limbo

    Hello everyone! I have been lurking for a while.
    Here is my story.

    MRI @ 37yo due to right facial numbness-showe WML possible MS
    Was told by GP to not worry about it an numbness resolved

    Last yr @ 41 yo was sent to neuro for neuropathy in my legs. I then was experiencing a "hug" sensation and bladder incontinence. Neuro saw old MRI, sent for new MRI, again it was positive.
    He sends m to MS Speciaist Neuro
    I have had labs (every test you can name)
    only VitD came back low and CRP was high

    LP was negative, another Brain (positive) and c/t spine MRI negative)

    VEP-negative
    SSEP-positive but states due to possible mylepathy

    I see my MS Neuro next Thursday, so maybe answers?
    I am not a doctor, but I play one at work

    #2
    Hi TNVolMomma and welcome

    Thanks for sharing your story with us.

    If I'm reading your post correctly, you haven't had any tests since last year. You have been referred to an MS Specialist and your first appointment with him is next Thursday, is that right?

    Originally posted by TNVolMomma View Post
    I see my MS Neuro next Thursday, so maybe answers?
    The MS Specialist might want another MRI, if it's been a year since your last one.

    You may get some answers about whether or not you currently meet the criteria for an MS diagnosis.

    This is info from an article (National MS Society website) called Diagnosing MS:

    Criteria for a diagnosis of MS

    In order to make a diagnosis of MS, the physician must:

    Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

    Find evidence that the damage occurred at different points in time AND

    Rule out all other possible diagnoses


    https://www.nationalmssociety.org/Sy.../Diagnosing-MS

    If you have any questions, just ask and we'll be glad to help, if we can.

    Good luck at your appointment, and let us know what you find out.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thank you Koko!
      I had my 1st MRI 5 years ago, then had another last Nov., then had another this month. All of brain, I also had my C/T Spine MRI, Lumbar Puncture, and a whole lot of labs this month.
      In November, after that MRI, my regular neuro sent me to a MS Specialist in Knoxville TN.
      Labs were normal except Vit D and CRP, Lumbar was normal, VEP was normal, so far, I have 3 positive brain MRI's and a positive SSEP. The MRI's span over 7years.
      I will keep everyone updated
      I am not a doctor, but I play one at work

      Comment


        #4
        Originally posted by TNVolMomma View Post
        I had my 1st MRI 5 years ago, then had another last Nov., then had another this month. All of brain, I also had my C/T Spine MRI, Lumbar Puncture, and a whole lot of labs this month.
        Ok, so you have had recent tests - thanks for clarifying.

        You've seen the MS specialist already once before, so that's good that you have an expert
        on your case.

        Originally posted by TNVolMomma View Post
        I will keep everyone updated
        Yes, please keep us updated!

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Your results sound similar to mine. I'm still in limbo too. I saw MS specialist last week and she ordered a couple other tests to check for other causes. She told me I'm a complicated case. I hope you get answers soon!

          Comment

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