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

    2. I’ve had PPMS since I was 19…I just had my 69th birthday in June. MS is such a huge pain in my butt for the last 10 years, but before that I raised 2 disabled (one severely disabled), went to college and became an RN, did community work..etc, all with the help of my husband of 52 years…yes, we married very young. I have found one must find joy in each day, have a huge belly laugh (I can crack myself up and no, I’m not going 🥜s). Smile, it make you feel better ❤️‍🩹 and figuratively dance like no one is watching! Each day is a gift and I don’t intend to waste any of them! 🤗🙌🏻🎶And music is food for the soul!

  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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