clinical trial

  1. Kristina1

    mexiletine side effects please advise

    Hi I was hoping others who are on or have tried mexiletine could chime in with their experience. Apologies in advance for the length of this post. Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told...
  2. S

    Edaravone feedback on its effectiveness

    Hi first time on this forum. Seamus from Ireland diagnosed1year but symptoms about 4 years, 49 married 4 kids. What I would like to ask people is about Edaravone. It has been in use in the US since 2017. It is not available in Europe yet but there is a large clinical trial this year on the oral...
  3. E

    On a PLS rating-scale and clinical trials

    Here is an interesting video: https://vimeo.com/278845845
  4. C

    Webinar: Dr.Bedlack, Cured by Curcumin?

    If anyone is interested in watching tomorrow at 11am - 12pm PDT “There are 3 validated "ALS reversals" that occurred on curcumin, and there was even a "positive" clinical trial done in Iranian patients with ALS.”...
  5. Bestfriends14

    Problematic in-laws

    Hello, I would like to get some feedback on an issues that my poor husband has faced with his parents. In short, his parents took off and moved 4 hours away when my husband was in a bad way from a clinical trial he was on. They didn't tell him they were moving, and after 8 days of them being...
  6. Bestfriends14

    The only person ever cured of ALS?

    I tried the search bar, but either it's my phone or the user, and I'm unable to actually search what I'm looking for. So, my question is on a topic I'm sure was brought up a few years ago. What are anyone's thoughts on Ted Harada, the person who was apparently cured of ALS in a clinical trial...
  7. Bestfriends14

    A question for PALS

    Hello, My husband has just ended his clinical trial (he dropped out March 28th) for Pimozide. Apparently, he's not progressed in his right leg or arm since last September but has only slightly in his left leg, which is his drop foot leg. However, I am finding it harder and harder to believe...
  8. E

    Acthar Gel Trial

    My PALS is currently three months in to the Acthar Gel clinical trial. I know there was some people asking about it earlier, I wanted to post in case anyone had questions. I don't feel like it is reversing anything, but it has really helped her stamina and appetite.
  9. Bestfriends14

    Bulbar onset?

    I'm currently running two threads but on two different topics. Hope that's ok. My husband is on a clinical trial of Pimozide and shortly after starting, he exhibited very worrying side effects. One of those SEs is slurring his words. I'm beginning to worry that it's not just a side effect but...
  10. Bestfriends14

    Pimozide

    Happy Friday everyone (and Saturday to some). My PALS started on the phase 2 clinical trial of Pimozide on December 20th. The first week he had no side effects, but the last several days have been brutal. Excessive drooling, slurred speech and a shuffling walk. He sleeps constantly, too, and...
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