Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

Progression of PPMS

I was diagnosed with PPMS three years ago. I’m 64 now. When it all started I could walk and now after three years I’m in a wheelchair. I can walk very little, maybe 5 to 10 feet with a walker and it is very difficult. My question is, at this rate, how much longer do I have before I am completely disabled? Because it seems to me the MS has progressed really fast. Does anyone one out there share my concerns?

  1. Hi, . I am sorry you are dealing with the progressing symptoms of PPMS. I wish I could tell you how your disease will progress, but I really can't. Has your doctor been willing to give you any timeline to work with?


    We do have at least a couple of contributors here with PPMS, and I wanted to share some of their work with you. Here's one piece by Mitch Sturgeon -- https://multiplesclerosis.net/living-with-ms/rare-primary-progressive. And here's one piece by Mike Russell -- https://multiplesclerosis.net/stories/explaining-condition. I know these pieces aren't quite what you were looking for, but I wanted to share them so you would be able to find some folks in the same situation as you.


    PPMS *can* progress really fast, but I hope your doctors on top of your disease and are working with you to find the best treatment options for you.


    Here's one more piece that is a compilation of member comments from this community -- https://multiplesclerosis.net/living-with-ms/life-ppms. I want you to know you're not alone in this. And I hope other community members see your post and comment here, too.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. I'm sorry to hear about your diagnosis and your struggles with walking. It's not an easy diagnosis to manage, so I'm glad that you're plugged into this community here for support and just to connect with others who are living with this disease as well.


      Regarding the progression rate, I honestly don't know that there is a "timeline" so to speak, as MS affects everyone so differently. That said, I completely understand your desire to want a better understanding of what to expect given that it's having such a significant impact on your life. Has your doctor shared any expectations with you? They're probably the best person to answer this question as they have an understanding of your specific health.


      That said, I do hope that others in the community here chime in with their experiences so you can learn from them too. And it looks like Erin has shared some good resources with you as well, so definitely check them out too.
      - Best
      Alene


      1. There are no neuros where we live. The closest is 2 hrs. away. I did see her last yr and she pointed me to physical therapy using a technique called "newbie". I tried it but to no avail. My most difficult problem is bending from the waist to the floor especially when bending my legs. I thank God every day for my wonderful husband who watches me and sometimes actually jumps to my assistance. thanks for all of your comments.

      2. , ugh. I know it stinks when there are no neurologists in your area. This happens quite a bit, actually. And, even if there is a neurologist close to you, there's no guarantees that they'll be a good fit for you and your needs.


        I'm sorry the therapy technique recommended by the neurologist didn't work so well for you, either.


        I'm glad you have a good support system in your husband. I know having support can make things a little easier. Even if you are only able to see the neurologist once a year, that will help both you and the doctor track the progression of your symptoms. So, even though the neurologist is a long drive, if you can go annually, that might be a good idea.


        Thanks for clarifying for us. I know our support isn't the same as having in-person support, but please know we're here for you!


        Best, Erin, MultipleSclerosis.net Team Member.

    2. Thanks so much for your reply! I do have a brother with MS and talked to him yesterday.

      Got some good info from him. He is cronic and totally bed ridden. He has been my mentor in
      many things.

      1. , I am glad your brother is a good source of support and information for you. While I wouldn't wish MS on anyone, I know not facing the disease alone can be comforting.


        Best, Erin, MultipleSclerosis.net Team Member.

    Please read our rules before posting.