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    • #16867
      Amanda
      Keymaster

      pALS with a known genetic mutation, did you have symptoms at an very early age that in retrospect you wonder if they were  related  all along to the genetic mutation or the onset of ALS? My father and grandfather both had extreme cramps in their calves and hamstrings. They also both had severe toe curling cramps. My father asked me if I experienced these and I said yes starting in my teens.  He also said he remembered the toe curling cramps starting when he was young. When I asked the doctor for the pre-fALS study about this he said that was part of what they were looking into.

      Did you experience anything unusual in your muscles or body? What genetic mutation do you have?  Do other family members with the mutation have similar experiences?

    • #16879
      Denise Burstein
      Participant

      My father was diagnosed with ALS and died in 1975. My sister had FTD/ALS and died in 2017. She was my younger sister. Now I have ALS. My Doctor determined I had a C-9 marker. She called my sister’s neurologist at Temple and their test wasn’t definitive. I didn’t get the cramping before I was diagnosed. Now I get al cramps. I just stretch the other way.

    • #16902
      David Crellin
      Participant

      I was diagnosed with c9ALS in March 2019. I nursed my mum through ALS through my teenage years, never thinking it could affect me.

      As to cramps: having lived a rather active life up to last year, including: kayaking 60 miles to celebrate my 60th birthday, cycling rather further for my 50th, running 15 miles a day for a week to support my wife on her 50th birthday long distance walk, – get the picture?

      I also play guitar, bass and bodhran in a band, or did.

      All the above led to frequent cramps, which I put down to lack of minerals after extreme physical activity.

      I now suffer cramps linked to muscle wastage: last night my right arm, wrist & hand cramped as I moved in bed.

      But I wonder which comes first, the cart or the horse? Were my cramps prior to ALS related to ALS? Or were they just caused by a build up of lactic acid and mineral imbalance after extreme exercise, or in the case of playing guitar, fretless bass and bodhran, after hours in frenetic celidhs and folk sessions?

      Incidentally, one of the first signs of ALS was not being able to play bodhran when I couldn’t grip a wooden beater with my right hand. I had to switch to guitar for the rest of the night. And strangely my left arm & hand have retained full strength and dexterity, such that I played guitar for a virtual performance last weekend!

      This disease is, as I keep saying, idiosyncratic. The way it affects me will be to some extent unique.

       

      • #16913
        Amanda
        Keymaster

        Thank you for sharing. I know everyone’s experience is unique. Everyone progresses differently and at a different rate. I hope that the research will provide us with answers in the near future.

    • #16908
      Susan
      Participant

      yes C9 gene and muscle cramps..first in calves then hands

      My late dad also C9 had bad leg cramps

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