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    #16
    Thanks Ellie, Ithat is reassuring - I have already been referred to Papworth because I have mild COPD - as somebody said to me the other day -nothing like doing it in style
    Last edited by Karen62; 11 March 2022, 15:10.

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      #17
      Karen62 I’m sorry for your and your sister’s diagnosis but hello and welcome to the forum, a great place for information and support
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #18
        My beautiful Jan was diagnosed and we were devastated but your experience proves that there is always somebody aliitle worse off Best wishes to you and sis May the fight continue !

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          #19
          Peters don’t Janice, I can really appreciate your feelings of devastation - we certainly felt that last year when my sister was diagnosed, it was heartbreaking because she is my little sister. This year it was a shock but I sort of guessed and even the neurologist was surprised when I first saw her (she thought I was a little paranoid - she did apologise afterwards). I am by nature, a very strong and mostly positive person and I am hoping that will help with everything the future brings.

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            #20
            From my experience I would expect a gene is to blame. Both my sister and I have inherited a known gene, but my sister hasn't got MND. I have wondered if her bipolar diagnosis might be from it. Fortunately, her only daughter has NOT inherited it, so she and her children have nothing to fear, at least from that gene!!
            Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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