• Lori became a registered member 1 year, 9 months ago

    • Hello Lori,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even suggestions, just let Amanda (my co-moderator) or me know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Thanks Dagmar! So nice of you!
        I am trying to get on the discussion regarding fasciculations that you had posted

    • Hello Lori, nd welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

    • Lori, three months into my suspected familial ALS self-diagnosis — made official last month — muscle weakness has yet to REALLY hit me … Regular whole-body fasciculations remain my MAJOR symptom though, which is why I connect with you. This symptom is hardly typical amongst the ALS masses. I only hope it remains my MAJOR symptom like it has in your case 🙂

      • Hi Giles. Sorry to hear of your diagnosis. It is my husband who has ALS. He had fasciculations For 2 years and just now started to have some hand weakness. Neurologist said this is a good sign that he is a slow progressive. Best wishes for you!

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