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How Do You Know What Type Of MS You Have?

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    How Do You Know What Type Of MS You Have?

    This might seem like an odd questions but I feel the need to ask. To remind anyone who might not have ever read my previous posts....I was diagnosed via MRI in October. I don't get to see my neurologist until April. How do they know what type of MS you have? Is there criteria for RRMS, SPMS and PPMS? I guess what I am asking is how do they know, from the get go, if you are in RRMS or PPMS? I feel like my symptoms have been pretty steady since back in July when I finally realized I probably need to seek out care. Is it literally just a time game and a "wait and see" approach?

    Anyway, I feel that I am not explaining this well. Thanks in advance for reading and answering!
    "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
    ~Leonard Cohen


    DX November, 2020. Ontario, Canada

    #2
    This is a valid question and not odd at all! Most people (80-85%) first present with RRMS, but yes, it can be a wait and see scenario as time passes. These will help explain the different types:

    From MSAA - https://mymsaa.org/ms-information/overview/types/

    And from the National MS Society- https://www.nationalmssociety.org/Wh...MS/Types-of-MS

    I know first hand how difficult the waiting game is.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Hello Pistachio

      You explained well!

      Although it can take some time to determine the 'type' of MS upon diagnosis, I was fortunate and did not have to wait very long.

      I had already accumulated several months worth of progression (I had documentation, with the dates), when I had my first neuro appointment.

      After the testing was complete (neuro exam, blood work, MRI, spinal tap, neuro ophthalmologist, etc,) and all other conditions had been ruled out, my neuro dx MS.

      I met the criteria for a dx of PPMS:

      Unlike relapsing forms of MS, primary-progressive MS (PPMS) is characterized by a fairly steady, gradual change in functional ability over time — most often related to walking — without any relapses. Due to this basic difference in the disease course, different criteria are used to make an accurate diagnosis of PPMS. The criteria for a diagnosis of PPMS are:
      1. One year of disease progression (worsening of neurological function without remission), AND
      2. Two of the following:
      • A type of lesion in the brain that is recognized by experts in as being typical of MS
      • Two or more lesions of a similar type in the spinal cord
      • Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system

      My neuro then referred me to the Mellen Center for MS (Cleveland Clinic), where the specialists there actually told me that I was easy to diagnose. Guess I was just lucky(?)

      Take Care







      PPMS for 23 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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