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Do I have PPMS? Experiences with PPMS...

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    Do I have PPMS? Experiences with PPMS...

    I've noticed that I haven't really had any relapses these past years but that I've been getting a lot more psychical problems. It's a lot harder for me to do stairs for example, it's like I'm trying to lift up 200kg attached to my legs. Each haha.

    I have been having issues with my arms for as long as I can remember as well but lately it's been getting a lot more worse to the point I can't even lift the lid of a pot properly. All my psychical problems just seem to be getting progressively worse and it's definitely more noticeable when I'm tired.

    My MRI's for some reason also keep coming clean, even though I have all these psychical problems. In my first year of diagnosis I had over 16 lesions, they probably stopped after 15 and gave up counting haha

    Now my doctors think it's all the Tysabri's doing that my MRI is completely clean, however it doesn't explain my symptoms. If I were to have RRMS and these symptoms it should show on my brain, no?

    Could anyone here that has PPMS please share their experience? And does anyone think that I might have progressed into it? Would it be wise to tell my neurologist and ask or maybe not because they might pull me off Tysabri?

    #2
    Hi DexterMorgan,

    I am going to guess you started out as Relapsing/Remitting(RR)? It is not uncommon for RRMS to transition to Secondary Progressive(SP).

    The RR stage is usually an inflammatory stage. The SP stage is more a neurodegenerative stage. As someone heads for the SP stage symptoms can accumulate with the possibility of more disabilities. This is a generalization as everyone has a different experience.

    Information on the different courses of MS;
    http://www.nationalmssociety.org/What-is-MS/Types-of-MS

    Everyone, regardless of using the MS treatments or not can see improvements on MRIs. MRIs can be stable with or without MS treatments.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Dexter, your question is a good one. If no MRIs have been done to your spine, new lesions could have formed there. I'm not qualified to diagnose PPMS but you might ask your doc if you could get MRIs of your spine. Maybe you didn't have RRMS after all.

      Another thing, I asked this question of my neuro point blank. 'If I am not getting flares, could it be SPMS? Do you have to have new lesions for it to be progressing?' Her answer was "no". If no new lesions are forming then there is no progression.

      So many people on this site write that their symptoms are continuing to progress and it doesn't show up on the MRI. That is my experience, too. There seems to be a contradiction.

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