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Where’s more regarding primary progressive multiple sclerosis?

I am a 64 year old male, diagnosed 2 years ago.

Everything I see and read pertains to RRMS. I have PPMS and never hear mention of this. I was told that there are no meds for this. My last MRI showed the lessions going down my spine from my brain. The ones in my brain have not grown. Why don’t I see more regarding Primary Progressive????

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Comments

  • Kelly McNamara moderator
    4 years ago

    Hi Kevin,

    Thanks so much for being a member of our community and for submitting a story! We’re really sorry you’re going through this. Unfortunately, you are right that treatments for primary progressive MS are lacking. We do try to highlight information for those with primary progressive MS on our site, although we recognize that there is more on RRMS because it is more common.

    I highly recommend you check out some of the articles by our contributor Marc Stecker-Wheelchair Kamikaze, who has Primary Progressive MS. Here is one of his articles specifically talking about PPMS: http://multiplesclerosis.net/living-with-ms/potentially-effective-treatment-progressive-ms/. And you can read more about Marc here: http://multiplesclerosis.net/author/marcstecker/

    Also, here’s some other articles that touch upon PPMS:

    http://multiplesclerosis.net/what-is-ms/primary-progressive/
    http://multiplesclerosis.net/stories/journey-primary-progressive-ms/

    We welcome topic suggestions, so if you do have any feel free to submit them in the stories section. And of course, always feel free to share more about your story with us.

    Thanks,

    Kelly, MultipleSclerosis.net Team Member

  • boo
    4 years ago

    Good stuff, I too have primary progressive MS, and while there are no FDA approved treatments, there is treatment available, just not FDA approved. I am a 57 yr old man, and was diagnosed last OCT- 2014. I’m still working and can notice a slight progression of the MS, but my symptoms are mild. I stay busy, but I have limitations. I had Solu medrol last fall, (IV steroid) and it knocked out most of the symptoms, except balance issues. My biggest improvement has come from reducing stress. I was in a deadline driven position in home building in a career of 35 years. I made a course adjustment and am moving into a support role. That one change has been huge! I am the happiest person you will hear from today. MS is my little buddy that carries the bags and baggage. fluffs my pillow, opens the door. MS is a noun and only has what I give it.

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