• Allen Lewis became a registered member 2 years, 1 month ago

    • Hello Allen,

      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 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

    • Hello Allen, 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!
      Amanda

      • Hi Amanda
        Thanks for your warm welcome to the forum. I’m new here. I was (sort of) diagnosed with ALS about a month ago, pretty much confirmed by electromyography and nerve conducton tests two weeks ago. Then two days ago I had yet more tests including a cervical spine MRI, lung function test and blood tests I’d never heard that will take weeks to come back. All looking for other possible causes for the symptoms I’m showing (dysarthria) that might rule out ALS. But my impression from the doctors so far is: not very likely, i.e.- you’ve got it. So yesterday, still awaiting the last test results, I began taking Riluzole. I would be very interested in hearing the impressions of anyone taking this drug over a long period. Thank you kindly.
        Allen

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