• Leslie replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 months, 2 weeks ago

    Hi all,

    I’m new to this forum. My grandfather died of ALS in his mid 60’s. All I remember is him dragging is foot when he walked. Now, my 85 yr old father seems to fit the bill for respiratory onset ALS. We’re bringing him to an ALS clinic next week and will also have genetic testing done. For the past 3 months, since I realized what his dx will probably be, I’ve been twitching. Mostly my left calf, but also in other spots. My toes cramp occasionally, but they’ve been doing that for years. I’m 55 and already have severe health anxiety and depression …this has put me over the edge. I struggle with whether or not to get tested..genetically and clinically. Trying to live in the moment but not doing it very well. Thank you for any input or advice you might share. 🙏

    • Hello Leslie,
      My family has an extensive history of ALS, over 14 people starting with my grandfather’s generation. I’m 54 and have been twitching and cramping for decades — I’ve been involved in a pre-fALS study for about a decade. If you have any questions I’d be happy to talk sometime. Just let me know.


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