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    Is this how it is?

    I'm fairly sure I'm SPMS. I'm wondering if this means feeling like you're in the middle of a flare the whole time forever, or whether things settle down at some point?

    I can cope with gradually deteriorating mobility, but not this constant feeling of being in the midst of a bloody awful flare.

    Or it may be Aubagio side effects or the flare I've been in for ten weeks or it may be all three.

    Does anyone know whether this is how it is?

    I always thought with SPMS, ah well, I might be physically had it, but at least the flares will stop. I never thought it was just going to be one unending flare for the rest of my life. Because if this is how it is going to be, I'm going to need a lot more drugs.

    #2
    Sometimes people with SPMS still have flares. It could be that or perhaps you are not quite SPMS just yet. Each person is different. I have SPMS since just recently. I have had no flares since being diagnosed but have had a steady decline in my walking ability. I did have a new seizure with SPMS and they said sometimes that sort of thing just happens, it doesn't change my SPMS diagnosis, its just an event that has happened. You should ask your neurologist about being SPMS, and what he/she thinks about it. Then you should ask about this feeling of a flare. See what they think about it. You first need to find out what kind of MS you have before making assumptions about your symptoms.

    I hope you find out some answers and come back and post them here so we can learn from them.

    Take care
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      Originally posted by Thinkimjob View Post
      I'm fairly sure I'm SPMS. I'm wondering if this means feeling like you're in the middle of a flare the whole time forever, or whether things settle down at some point?

      I can cope with gradually deteriorating mobility, but not this constant feeling of being in the midst of a bloody awful flare.

      Or it may be Aubagio side effects or the flare I've been in for ten weeks or it may be all three.

      Does anyone know whether this is how it is?

      I always thought with SPMS, ah well, I might be physically had it, but at least the flares will stop. I never thought it was just going to be one unending flare for the rest of my life. Because if this is how it is going to be, I'm going to need a lot more drugs.
      Sometimes I feel the same way! But, I am still in the process of getting it 'figured' out, impatiently!fed

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        #4
        I hear you... I feel the same way and have the same questions.

        Comment


          #5
          I've had SPMS for over 30 years. Everyone's MS is different but I've found that figuring out what makes my symptoms worse and avoiding those triggers at all costs is a huge help.

          One is fatigue, one is heat, another is infection or injury.

          Overdoing just about any activity, including crocheting or talking, can create problems. You'd think I could get away with talking or crocheting but not for long.
          MEMBER OF MS WORLD SINCE 4/03.

          SPMS diagnosed 1980. Avonex 2002-2005. Copaxone 6/4/07-5/15/10.

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            #6
            I think there are two types of SPMS, one with relapses and one without.

            From what I understand the without is a later stage situation. The early stagers have some treatment options deemed suitable for them. In addition they may qualify for clinical trials which are not available to non relapsers.

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              #7
              Thanks, Dennissr, that gives me hope, and I do feel better today, so maybe the Aubagio is starting to settle in, and maybe this flare is finally coming to an end.

              Comment


                #8
                SPMS…

                I was diagnosed with RRMS about 16 years ago, was upgraded or downgraded to SPMS about seven or six years ago, now move back to RRMS. And due to tysabri my MS was pushed into remission but, when it flared up and nosedived it caused a lot of damage and took me close to three years to get used to those symptoms rather damages. I have learned with my MS, to accept what has happened and out of spite or stubbornness I do the best I can and hope it works. It is hard not to be disappointed or disheartened but it is what it is.Not the most optimistic of messages but if you want optimism find religion. LOL

                I am sure that there are benefits…… I haven't found them yet
                I wish you the best of luck. By the way how is your treatment going now?

                Comment


                  #9
                  Honestly, I dunno. I presume Aubagio takes a while to start working. This is week two. At least I don't feel like the end is nigh, like I did last week.

                  It's still unbelievably hot (42C today, 46.5 on Friday, 43 tomorrow) in this town, and I don't think that's helping much.

                  Since I have a clearly cognitively dysfunctional brain, I shall go to work come Monday. Logic, common sense and self-preservation are running a distant second, third and fourth to mule-headed stubbornness.

                  Also, very icy air conditioning at work.

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