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    Confused!

    Help!!! This is disease is so confusing. I was diagnosed with MS 12 years ago. I've had my assortment of relapses-on average 1 every other year with some residual problems because of them, i.e. cognitive issues, chronic itching and pain, etc. I don't understand how in the literature it says that you go back to baseline after recovering from a flare. Now every day is a MS day, it just depends on how bad. I always have spasticity (PT and personal training once a week for same to help combat same), trouble with balance, right leg weakness, etc. If we are supposed to go back to baseline, why do I have these issues, and why do they wax and wane every day of the week? Help, I am confused!

    #2
    You and I, same time frame, same deal.

    It hangs about. I don't think anyone really knows how this MS thing works.

    Every day is, now, a MS day for me, too. I think it's time, and until there's a cure, I think it's inevitable.

    Hey ho.

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      #3
      Originally posted by jmm9503 View Post
      I don't understand how in the literature it says that you go back to baseline after recovering from a flare.
      What literature says that? Reputable medical/scientific literature doesn't say that. If you can tell us where you read that, we can look it over and maybe get you unconfused.

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        #4
        I've only been diagnosed since last May, but IMHO my new "normal" is not even close to what it used to be. While it's not as bad as the flare I had in April, I always have some residual from it. I think that's part of the challenge of this disease is constantly adjusting your expectations for yourself.
        Diagnosed June 2011, Avonex 7/11-12/11

        "We don't describe the world we see, we see the world we describe"

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          #5
          Back to baseline?? I have never heard that. What I have heard/ read is that MS is a progressive disease. Demyelination can be occuring even when not in active relapse. Each relapse further damages myelin and (worst case scenario) axons. Symptoms can vary, wax, and wane. Some people never progress, many do.

          Not to be the bearer of bad news or anything, but I would hate for you to make important decisions regarding treatment and lifestyle based on incomplete informaiton.

          Good luck and I do hope that you can get back to a more comfortable state
          Newbie

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            #6
            Not Black & White...

            but rather shades of gray. After 12 years it's possible you've moved from RRMS to SPMS. Here's what the NMSS sites says about the two.


            Relapsing-Remitting MS (RRMS) the most common disease course is characterized by clearly defined attacks of worsening neurologic function. These attacks which are called relapses, flare-ups, or exacerbations are followed by partial or complete recovery periods (remissions), during which symptoms improve and there is no apparent worsening or progression of disease. Approximately 85% of people with MS are initially diagnosed with relapsing-remitting MS.
            Secondary-Progressive MS (SPMS) follows an initial period of relapsing-remitting MS (RRMS). As a person transitions from RRMS to SPMS, the disease begins to worsen more steadily, with or without occasional relapses, slight remissions, or plateaus. As long as the person continues to have relapses, the SPMS course is considered to be both progressive and relapsing.
            At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry

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              #7
              Thanks to everyone who has replied. I made a bad mistake in stating "literature", but rather this is what my MD said yesterday, that you go back to baseline. I assumed (yes I know what happens when you assume) that this was based on literature. My husband has assured me that she meant a "new" baseline" one that is after the flare and not back to a baseline pre-MS. This is still a confusing disease, even after 12 years +.

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