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Progression

I have had RRMS for over ten years. The last two weeks I have not been able to walk. I have to admit that it is not the same as my past relapses. I went to my Neuro yesterday and he thinks my MS is progressing. He is going to order five days of steroids but told me not to expect to get the same results as before. He has ordered an MRI and said if there are no enhancing lesions or new lesions he will say it is progression. I am not ready for this. Even though we know it can happen when it becomes a reality it is hard to get your head around it. He will probably be changing my mess. I’m hoping I can prove him wrong but if I don’t I’m not sure how I am going to handle being in the wheelchair most of the time. What and how do others feel and handle this transition. Right now I’m just sad.

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Comments

  • rnhviolin
    2 years ago

    As my MS progresses, and my walking becomes more limited without an assistive device, I fine myself becoming more and more frustrated and depressed. I am angry that I feel great when I am sitting in a chair, but unable to take 10 steps without either furniture walking, or using a device. My brain thinks it can still ski, run, and be physically active. My brain does not match my abilities. Almost not believable. I spend hours a day trying to navigate this new life. It is truly not easy. I truly understand your stories.

  • Grandma5 author
    2 years ago

    Sounds like me. It is good to know. I’m not alone

  • JustsayN
    2 years ago

    IT happened to me about 6 years ago. After enduring 10 years of MS with all the treatments, therapy and the rest, I had the big one ( exacerbation that took me from the cane to a walker). This called for major changes. I had to change where I lived. Change how I moved at work. Help others accept that I was still capable. The biggest adjustment was to the use of a wheelchair daily.

    So I got(have) a power chair. It’s not too hard to accept because it alllows me quite a bit of independence. I live alone and my chair helps me to be safe. My chair allows me to “keep up” with other on their feet. I can go to the grocery store or to church on my own.

    Yes there is some sadness. I have lost friends or just don’t get invited too much anymore. So I invite others to join me. I select places I know can accomodate the chair. I have had some fun with them.

    My life has changed a few times since the doc said “MS” I just try my best to change for the better

  • EileenB
    2 years ago

    I’m so sorry you are going through that I was diagnosed with RRMS June 22, 2016 so very new to this. Thoigh I had my first major blowup Dec 9, 2014.and called it transverse mylitis. That was very bad and I honestly thought I was going to die. It turned out the staroids were worse than the disease. I’ve had a few attacks after that and everyone one them is worse than the last. I hope the staroid help and you get better very soon.
    Not sure if it would help, but Ive been checking out the Dr. McDougall MS diet. Within 2 weeks I had already increased my energy.. I’m always looking for for something to help

  • Grandma5 author
    2 years ago

    I think I will look into that diet. Let me know if you think it helps. I am on day 5 of the steroids and am not getting the results I had before. I hate when my neuro is right in wanted to prove him Wrong!

  • 14nue0g
    2 years ago

    I know your sadness, I too am a grandma of 5 & haven’t really walked for about 2 yrs. Have I become used to the disease & just accept it? I know I should fight it but most days I’m just too tired.

  • Grandma5 author
    2 years ago

    It is a struggle I am finding. I am using the wheelchair and or walker more than I did before but am so unstable I’m afraid I’ll fall. I’m going to start PTL and water therapy so hopefully that will make me stronger

  • DonnaFA moderator
    2 years ago

    Hi Grandma5, We’re sending all good wishes your way. Please know we’re here to share support. -All Best, MultipleSclerosis.net team)

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