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    Losing mobility

    To date I have failed on Copaxone, Rebif, and Tysabri. I am not currently on a DMT. I am PRMS (the R is just for show). I am also declining quickly, 5 yrs ago I could walk for miles, now with a leg brace and forearm canes, I'm lucky to do 100 ft. by then both legs are in so much pain from hips to toes. I've actually looked to see if they're bleeding.

    I'm considering asking my doctor about IVIg. I'm JCV+ and I've run out of options.

    Peace,
    Anna

    #2
    Wow, that sounds discouraging. I hope your neuro is also intrigued by nutritional interventions. For me, being dairy free and gluten free with very low sugar helps to avoid migraines and muscle spasms. I also do yoga to keep some flexibility and strength. You´d be amazed how chair yoga can be a workout. Then there´s the daily affirmations and breathwork- without those I don´t know how I´d cope. Am on Ocrevus and am avoiding relapses. Other stuff has cropped up, but I am grateful for no relapses. I hope that your PCP and neuro come up with a plan with your input.

    Comment


      #3
      Originally posted by hobbit View Post
      To date I have failed on Copaxone, Rebif, and Tysabri. I am not currently on a DMT. I am PRMS (the R is just for show). I am also declining quickly, 5 yrs ago I could walk for miles, now with a leg brace and forearm canes, I'm lucky to do 100 ft. by then both legs are in so much pain from hips to toes. I've actually looked to see if they're bleeding.

      I'm considering asking my doctor about IVIg. I'm JCV+ and I've run out of options.

      Peace,
      Anna
      Hi Anna

      I'm sorry to learn that your MS has caused decline in your mobility over the past 5 years.

      Originally posted by hobbit View Post
      I am PRMS (the R is just for show).
      The R (relapsing) would be an important factor in deciding on other treatments, as well as the P (progressive).

      This is from the Mellen Center for MS (Cleveland Clinic) approach to treating progressive MS:

      "One reasonable differentiation when deciding on treatment is whether a patient is “progressive
      with relapses” vs. “progressive without relapses”. The primary efficacy of immunosuppressive or
      immunomodulatory therapies is in prevention of new CNS inflammation and relapses. Because
      PPMS is diagnosed only in the absence of relapses, patients with PPMS are less likely to benefit from immunomodulatory therapies."

      Also:

      "However, we recognize that there is a subgroup of patients who have had a recent and rapid decline in function in whom it is difficult to clinically discern the difference between progression and multiple consecutive relapses without recovery.
      In this group of patients, more potent therapies may be indicated."

      I highlighted these two paragraphs for you because, since you may be having relapses(inflammation) that you are not aware of (and not purely neurodegenerative progression), there are other potent therapies that your neurologist may want to try.

      They are outlined in this info from the Cleveland Clinic Mellen Center for MS.

      Also recommended is physical therapy and stretching to help preserve abilities. Perhaps you could receive therapy at home, which would help make it easier.

      https://my.clevelandclinic.org/-/sca...eet.ashx?la=en

      In any case Anna, wishing you the best.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        I just hope something comes up that will actually help repair us and help everyone with MS. Sorry to hear your sliding. It’s very tough. And peace too you too.
        It was one agains't 2.5million toughest one we ever fought.

        Comment


          #5
          Originally posted by oceanpride View Post
          I just hope something comes up that will actually help repair us and help everyone with MS.
          Amen to that, oceanpride.

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment

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