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Missed Tysabri, impact on cognition

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    Missed Tysabri, impact on cognition

    Interesting. I am two weeks out from my last scheduled Infusion. They suspected an infection, so it was not given. Turns out no infection, so get my Infusion tomorrow. I am one of those people who feel it the week before an infusion. So this last week has been really tough. Much more fatigue, weakness, and dizziness is back. I think it is the fatigue causing other symptoms.

    Here is the really interesting part. I have been in the middle of a program designed to help working memory. I was seeing improvement, then the missed Infusion. My performance has dropped down and the exercises with moving pieces now make me feel like I did when I worked.

    If my performance increases after Infusion and other issues go away, then I will know for sure Tysabri is not only slowing progression, but helping with daily symptoms. I know it is not designed to do that, but I may be one of the people who get added benefit. Will let you know. I know my neuropsychiatrist is curious too.

    In the meantime, Infusion can't get here quick enough.
    Kathy
    DX 01/06, currently on Tysabri

    #2
    Thanks for sharing Kathy
    I am looking forward to your update!
    Linda

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      #3
      Thanks Linda. Returned back to prior level of testing before missed Infusion. What a great benefit Tysabri is giving me.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Tysabri

        Originally posted by pennstater View Post
        Interesting. I am two weeks out from my last scheduled Infusion. They suspected an infection, so it was not given. Turns out no infection, so get my Infusion tomorrow. I am one of those people who feel it the week before an infusion. So this last week has been really tough. Much more fatigue, weakness, and dizziness is back. I think it is the fatigue causing other symptoms.

        Here is the really interesting part. I have been in the middle of a program designed to help working memory. I was seeing improvement, then the missed Infusion. My performance has dropped down and the exercises with moving pieces now make me feel like I did when I worked.

        If my performance increases after Infusion and other issues go away, then I will know for sure Tysabri is not only slowing progression, but helping with daily symptoms. I know it is not designed to do that, but I may be one of the people who get added benefit. Will let you know. I know my neuropsychiatrist is curious too.

        In the meantime, Infusion can't get here quick enough.
        I am anxious to see the results of your latest infusion. I only know that Tysabri is supposed to delay the progression of MS. It is recommended over all of the other MS treatments. I've been on Tysabri, it has not done what you mentioned, but I can tell when it is time for another infusion! Carol

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          #5
          Hi Carol,

          Thru my own experience, it did help with daily. Once infused, my testing results bounced right back. It could be the fatigue affected the testing when I missed the infusion. Or did it have direct impact on cognition? I won't know, but any benefit is a bonus.

          You are correct that it is designed to slow disability and not to help with symptoms. But in some cases, it has helped. I had a lesion that remained unchanged in size for about six years. Once I started Ty, it shrunk some. Others who have walking issues, improved. Again, any improvement is a bonus.

          When I started Ty, I immediately felt better energy wise. I really don't if it was stopping my old med, which I didn't realize made me feel crappy. Or the Ty itself. Too many variables, but just know I felt better.
          Kathy
          DX 01/06, currently on Tysabri

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            #6
            A great med for many!

            Kathy,
            I am so happy for you

            I started my 11th year on this blessing of a med last Oct. Since, I am now infused 56 days I can't remember if I am at 112, 113 or more infusions I am one who, thank G-d, has seen a halt in progression and relief of some sx It didn't help my R leg, which I was hoping for. It did give me QOL and I do ALL my scheduled activities that I am capable of

            Carol, I hope you will be a Happy Tysabri infused person
            Linda

            Comment


              #7
              Tysabri is the greatest drug that I have ever had. Not much more to say about it. I love it!🌷🌷🌷
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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