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  • Dagmar…. Without riluzole, I’m not taking any prescription medications. Tons of over the counter supplements.  I do wish I could handle the drug, but my breathing was severely compromised.   I’m taking another look at radicava.

  • When I started on Rilutek (brand of Riluzole), I made it to the three week point. With the full dosage, one in the morning one at night, I started experiencing very labored breathing and shortness of breath. And though my neurologist said this was not a side effect of the drug, my web MD research shows that it is Indeed an uncommon side effect.…[Read more]

  • A year after my diagnosis and 18 months after symptoms, I have attended my first ALS Clinic.  I didn’t receive any “treatment” from the PT or OT or the neurologist.  I’m on the fence about attending another (auto scheduled by the neurologist every 3 months) vs just having a one-on-one with the neurologist.  I’m wondering if this is just a “f…[Read more]

  • Cate became a registered member 2 months, 3 weeks ago

    • Hello Cate,

      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…[Read more]

    • Hello Cate, 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 m…[Read more]

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