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How will *I* relapse?

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    How will *I* relapse?

    So I previously asked how RRMS worked and got some understanding while letting the internet be the internet... Hahaaa

    So there is a thread on how a user will know I'd they flare. Now about two weeks after my second Ty infusion I was starting to feel much better. It was the first time things had ever gotten better instead of worse since this all started.

    In that thread it was mentioned to be considered a flare it must last at least 24 hours (ok) and be separated by 30 days. That's where I'm lost. My neurologist defined my condition as advanced and aggressive and I basically had all the symptoms at the same time. She said that I will not experience remission because I'm always relapsing, unless Ty works. I feel it is.

    How can I ever define experiencing relapse? If this is my remission there is still everything' just less. There is no separation or am I basically discovering what's permanent?

    Like I said I'm finally feeling significantly better. Sweet. But nothing's gone, just less. Some a lot less

    Second: if you go to my profile there is a link of a picture animation I made showing the 24 frames of one MRI view. It's obviously not from software used by radiologists. But all the white blobs. Are those lesions or then what? It is what my neuro noted when she showed me so at least I know it's a bunch of stuff that shouldn't be there.

    I kind of want to ask when I relapse will everything come back? Will it be worse, better, the same? But I know it's wait and see.
    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

    #2
    You know, Chowda, no-one has much of an idea how MS works. No-one. I'm sure if we were strapped into a MRI machine all day every day, like the old iron lungs they had for polio, the scans would pick up constant change.

    There's a lesion, there's another one, there are half a dozen. Probably the same for lots of people, who never have much trouble, and never feel the need to go to a neurologist. We just get to the point where we need to see someone, and eventually we're diagnosed with MS.

    Tysabri is meant to be really good, so odds are, you'll be okay-ish. Seventy percent efficacy as opposed to 30 point whatever percent. Sounds better to me.

    Therefore, be of stout heart! Eighteen years I've had this. I still work; I still stagger. My brain is not what it was, but it's still okay.

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      #3
      Chowda

      You will seriously know when you are flaring. Let me rephrase that. You will know when you are in a flare that needs to be treated. Not all flares are created equal. You can barely function during a major flare. A few symptoms here and there can be expected...even on TY.

      For example, I am indeed having a few break through issues right now, even though I am on TY. Inconvenient? Yes. Maddening? Yes. But if I wasn't on TY, I would be in a full blown flare right now.

      As far as the 24 hour, 30 day thing. I found out last year that is only a reference point. I was what in what they call cyclical flares...never heard of such a thing. I was spiraling and it was serious. I was having major flare after major flare and there was very little break in time between them.

      For me, I usually wait out flares. But I always go to the doctor if I am having Optic Neuritis, Vertigo that can not be controlled for more than a week, or if I start wall surfing. Those three symptoms for me turn into Major Flares if I do not nip them in the bud.

      You will figure this out quickly. My former MS specialist taught me how to read my MRIs. I stopped doing that...I recommend you do that too.
      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'm on Tysabri #55. It took 4 months for my headache to go away, after that, it's been ok. I don't think i've had anymore episodes. It took a few months for it to cool things down though.

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          #5
          I think I understand. My neuro said I don't haver emissions because of so many sx i don't stop relapsing.

          I still have vertigo, numbness etc. everything just finally less. Even the burning feeling in my chest has gotten better, it even disappears for a week but then comes back. Am I even in remission?

          If I am, this is my first one a year in now. I just am so scared of going back. Physical and cognitive everything. I lost at least 10 lbs. and my left wrist you can easily see is skinnier than the right. I feel closer to normal, you can tell I'm scared of going back
          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

          Comment


            #6
            I was pretty confused about remission too. After my first flare-up, my symptoms actually went away completely - that was clearly remission. Then in October of last year I had a major flare-up and started on this rollercoaster again. The symptoms are less now but they're all pretty much still happening. I asked the doctor what this means, and she said basically I have a new baseline of symptoms that are residual; it's no longer considered a flare-up. So I guess this is "remission."
            Becca

            Dx 2005 RRMS
            Pressing on, whatever comes.

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              #7
              I hate the word remission! Many of us don't go into remission? Remitting is a better word since my symptoms have improved some but have never gone away since the first attack over a year ago.

              Comment


                #8
                Chowda -- you mention "burning feeling in chest". When I am fatigued, I get that burning feeling in chest, back or ribs. I have been to PT for structural issues, treated for GERD, seen a cardiologist -- everything else checks out. Only recently when it came back again during a period of sleep deprivation, ALONG with muscle fatigue and cog issues, have I started to wonder ...

                What has your doc attributed it to? Thanks . (And have you had those other things ruled out?)

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