• Mary became a registered member 1 year ago

    • Amanda replied 1 year ago

      Hello Mary, and 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!

      • Mary replied 1 year ago

        Thank you very much! This group is wonderful! I have not been diagnosed but have been having distressing symptoms for a year now (constant muscle twitching, primarily in my lower legs and feet, but also my thighs, stomach and arm, and leg cramps) and am trying to get to the bottom of it. My EMG earlier this year was “normal” and unfortunately my neurologist is less than helpful, so I’m at the point of trying to find a doctor who will work with me. I appreciate all of the information on this site – it seems like a wonderful, caring, helpful group.
        Thank you again!

        • Amanda replied 1 year ago

          I hope you are able to find a knowledbeable doctor who is able to help provide you with the service and answers you need. I also hope and pray you do not have ALS. There are so many illness that mimic ALS, so hopefully that will work out in your favor. Please keep me posted.

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