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    What to say?

    Hi Everyone...I'm just looking for your opinions. I have an odd combination of rare disorders: MS (secondary progressive), myasthenia gravis, and probable stiffman syndrome. So when I meet people, and they wonder why I'm in the wheelchair, or using the cane, I'm never quite sure what to tell them. I assume most people probably don't want to hear the whole list of disorders....how much is too much info? I'm sometimes tempted just to say I have MS, simply because people are more likely to have heard of it. Opinions/thoughts? Thanks!
    "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
    ~Mother Teresa

    #2
    Sorry to hear you've got so much going on!

    I'd probably just say MS.

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      #3
      I'm sorry too, Beth. I would advise you to say what's most comfortable for you. MS is more widely known so maybe this answer is all that's needed and maybe the less said is better - especially if these people are mere acquaintances.

      You take care and hold you head up high
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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        #4
        Hi BethM, so sorry to hear you are dealing with all of these illnesses...I cannot imagine the challenges.

        I agree with the previous poster - whatever feels comfortable for you. And that answer may be different depending upon who is asking and how you are feeling that day (how much do you want to engage).

        For what it's worth, I find that many folks do not really understand MS - they often get it confused with Muscular Dystrophy [sigh]...my point being you'll probably end up educating folks anyway regardless of your answer.

        Positive energy being sent your way....

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          #5
          If you're looking to keep it simple, you could always tell them you have a neurological disorder.
          Diagnosed 1/4/13
          Avonex 1/25/13-11/14, Gilenya 1/22/15

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            #6
            Thanks for the ideas...I'll probably opt for saying as little as possible, which is what I have tried to do at times. My problem arises though if people ask questions and I try to explain, which is hard to do without confusing the 3 disorders. I do agree, though, that even though it may be known better, people often still don't understand MS. DebbieB...I have also had some people confuse it with Muscular Dystrophy, and think it's covered by MDA. Which, in my case, is even harder to explain, since Myasthenia Gravis is, in fact, covered by MDA.
            "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
            ~Mother Teresa

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              #7
              Hi Beth........
              May I suggest this initial reply, MS (or, Multiple Sclerosis) for one thing. This keeps it simple, yet leaves the door open (option) to go beyond MS if the situation warrants.

              Gomer Sir Falls-a-lot (last fall this afternoon)

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