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I think I finally understand what my neuro meant...

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    #1

    I think I finally understand what my neuro meant...

    I read the assessment she distributed to my other docs. The words severe, advanced, aggressive were used.

    She said I'm very different, unique. I replied 'special'.

    She said to me when I last saw her I basically have all the symptoms at the same time and it's so aggressive I cannot experience remission without meds because I don't stop relapsing.

    I'm going for infusion 4 at the end of the month but I believe I am finally in remission. This is the first time that's ever happened.

    I guess that's why she put me on Ty as my first med. I don't even need a cane that bad anymore.

    MY CAREER IN DANCE DANCE REVOLUTION ISN'T OVER!!!
    Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
    Just because we don't feel flesh, doesn't mean we don't fear death
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    #2
    Chowda, that must feel wonderful. So glad the tysrabi is working for you .

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      #3
      Chowda

      Last year I was having what they called Cyclical Flares. First time I ever heard of them...and apparently it is rare. It was not one long exacerbation. They are different than regular flares in that they don't have a 30 day waiting period between each flare. I did that for six months and Boy Howdy did it suck.

      Thing is, I just came off a DMD and was getting ready to start Tecfidera then the Flares came. And it was bad...just like you are describing.

      It took Tysabri to put me in remission. And yes, if I go off a DMD...I too am screwed. So I am now watching Lemtrada and these Stem Cell Transplants very carefully.

      Sounds like you were having cyclical flares too. I am told, and I am no authority, but cyclical flares suddenly mimic very aggressive and severe SPMS.

      I am glad you are remitting!
      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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        #4
        I hope you continue to feel better. I'm sure you could use a break.

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          #5
          Glad it is helping!

          I basically have all the symptoms at the same time
          Isn't that most people though? Maybe it is different for RRMS? I know for PPMS it's all symptoms all the time.

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            #6
            No clue. She did say unique and different. Maybe it was the severity? I'm an MS newb.

            CCAC OT came by today to close my file because I'm good so 'inactive' now.

            I hope this lasts for a long long time. I'm pretty much cane free now. Far from normal but a lot closer. My mood is really good too
            Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
            Just because we don't feel flesh, doesn't mean we don't fear death

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              #7
              Hi Chowda,

              So glad you're feeling better!!!

              Take care

              Minnie76

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