• James A Gans became a registered member 10 months ago

    • Hello James,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is 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. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with 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

      • Thank you Dagmar It has taken several months to accept that I have ALS and research information. I still have to have another EMG and MRI within the next several weeks.
        I would like to ask you a question if you have time to respond. Because you have been diagnosed with ALS over 10 years ago have you and are continually taking a medication like Riluzole?

    • Hello James, 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!

      • Thank you Amanda for your response. I’m sorry that ALS has been so strongly genetic in your family. I don’t believe anyone in my paternal or maternal side had ALS. Although I had a paternal great grandfather who passed away 52 years before I was born at age 40 in 1900. I don’t know if it was possibly ALS but more likely cancer. My ALS started this last Summer but feels of course quite a bit stronger on my arms, mostly my right arm/hand currently. I still have another EMG and MRI coming up within a month and I have not been yet prescribed to rilozule. It’s all so frightening! I do pray that there soon will be something to stop the progression of ALS Thank you.

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