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Neat letter to those who don't understand: What living with MS feels like

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    #16
    So very NEEDED!!!

    Ok, so I even printed it off BEFORE I finished reading the first one! LOL!

    I'm specifically saving it for my dh to read. The ones that I could REALLY identify with the most (after I read thru the whole thing) were the ones about: heavy, painful legs, foot drop, memory loss, fatigue, and urgent need to pee! Did I mention memory loss/cog fog yet?

    Most recent one that hits home, though, were the ones that talked about bizarre & inexplicable sensations, pins and needles, and burning feeling. I've developed nerve pain with this most recent flare. I had pins/needles and tingling/numbness to a MUCH smaller degree and much less often. THIS is NO FUN (of course ) and hurts so much it makes me want to cry.

    My kids just went to MS Kids' Camp, and (I hope) they did some of the activities I saw on a video from another chapter out in the NW. There, I saw them putting extra large dish gloves on the kids and getting them try and pick up stuff, spinning them around a few times and then getting them to try and walk, etc. REALLY think they should have an MS Spouse's Camp, too!

    Thanks for posting this. For the kids, I'd probably change the wording to a few things, of course, but sometimes this wording is what is needed for adults!

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      #17
      @Judy I'm so happy that happened!

      My DH also read and felt better about understanding. I'm really happy everyone has enjoyed this so much I found it on a separate MS forum and thought it was the most brilliant thing I've ever read

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        #18
        Bumping up this older thread, but well worth reading and sharing!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #19
          great things always remain great!
          hunterd/HuntOP/Dave
          volunteer
          MS World
          hunterd@msworld.org
          PPMS DX 2001

          "ADAPT AND OVERCOME" - MY COUSIN

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            #20
            Good one and so true

            sHOO
            Shoo

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              #21
              Ditto!
              There's a lot of old posts that still have a lot of value and are still a great n helpful read.

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                #22
                Bumping this up again from years past to share.. If you are having someone close to you that can't understand what you're going through, share this with them!!
                1st sx '89 Dx '99 w/RRMS - SP since 2010
                Administrator Message Boards/Moderator

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