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Primary Progressive MS (PPMS) Forum

This forum is for those with PPMS, care partners or caregivers to those with PPMS, or anyone who wants to join the PPMS conversation and learn more.

Please feel free to share your PPMS questions, journeys, symptoms, or even just to vent or talk. 🧡

  1. I am a PPMS victim. I was diagnosed about 5 years ago. I am still learning how to cope with it.

    has been very helpful and comforting, God bless her.


    1. Hi Todd, this is the place to keep learning and keep talking, that's for sure! It's always lovely talking to you. MS can be a (insert any and all bad words you can think of) beast sometimes and sometimes you just need to vent and have someone listen. We'll always be here for you. Sending lots of love and good thoughts your way Todd. 🧡

    2. you're absolutely right... ROCKS!
      Tamara, community advocate

  2. Hi I'm Jessica, about 5 yrs PPMS. Immediately started Ocrevus. I overall feel ok, things are definitely harder but I am managing good.

    1. Hi ! Welcome to this discussion! It is good to hear that you are managing your symptoms. I hope that mean Ocrevus is helping. Thinking of you. - Lori (Team Member)

  3. Hi all I have had PPMS for over 20 years and 5 years ago I lost control of my right leg. I mean I can't lift it or move it in any way, but I can fell it if something touches me and know if something goes wrong, which is quite weird but then isn't MS.

    1. Hi . That must be very frustrating, but I am glad you haven't lost the feeling in the leg. Do you do therapy to keep the muscles toned and the blood moving? Wishing you the very best. - Lori (Team Member)

  4. Hello my fellow PPMSers

    I know how difficult it is to deal with MS alone yet have our PPMS monster with us every minute of every day.

    Keep your head high, never stop fighting, always push forward with a smile and sense of humor 😀

    If we don't you just might go crazy! OK maybe I am a bit crazy

    Be safe and happy ya all

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