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    First post - Hi

    Hi, I began having symptoms 20 years ago if not before. I think I'm looking at a diagnosis soon now things are ramping up. Going for a rest now. Wish my limbs didn't feel so horrid - like electrified jelly!

    #2
    Hiya Karen J and welcome - although we all wish we didn't have to be here.
    20 years without diagnosis - good heavens
    I certainly know what you mean by "electrified jelly".
    Hope your path through diagnosis goes as well as can be expected. It's never easy.
    Hope to see more of you around here - they are a friendly and knowledgeable bunch.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.

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      #3
      Hi Karen J

      Welcome. 20 years and still not diagnosed that's a long wait.

      Love and hugs
      Denise xxx
      when i can think of something profound i will update this.

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        #4
        Thank you for the welcome. What a difference connecting makes.
        Learning that pacing yourself means resting before you get tired, just like you have to water the baskets before they dry out.
        Got the flaring matches going off today - little patches of pain that flare and fade. That started a long time ago when I found the doctors just look at you..

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