trial

  1. lgelb

    Sativex (THC+CBD mouth spray) shows spasticity effect in ALS, PLS

    Info on the Phase II trial here. It is on the market already in the UK for MS spasticity. The manufacturer, GW Pharmaceuticals, is negotiating with the FDA toward a US approval, having recently obtained approval for a CBD oral solution for certain forms of epilepsy.
  2. K

    Breathing got better?

    My dad was diagnosed this past March with ALS but we are sure he had it for about a year or so prior. He just went back this week for his three month check and his breathing went from 86% to 92%. They said that is rare. Anyone else experience that? With that being side he has become weaker in...
  3. V

    It's been 3 years

    This month marks 3 years since my husband was diagnosed. He is still progressing very slowly, for which I am thankful. His left hand is completely gone, his left arm is weak, and he tells me his right grip is getting weaker. He can still walk, talk, and eat. My caregiving role is currently...
  4. C

    Indian Ginseng and Velvet Bean

    This was on ALSnews this morning and i thought i’d share. My Dad already takes Indian Ginseng and now we’ll go get the velvet bean, assuming the AMX-0035 trial allows it...
  5. Nikki J

    An interesting trial

    Not a drug trial. The interventional is surgical. You have to live within 3 hours of a site Using thoughts to control arm hand movements. Mass General is a site and they just emailed about it. It looks very cool. Fortunately I don’t need it yet but I would look into it if I did...
  6. N

    Stem cell progress?

    hello, just curious if anyone is in a stem cell trial or know someone who is and how the progress is. Is it working? I know recently there were a lot of ALS centers in California that were accepting candidates for the trial and really haven't heard good or bad news about it. I had a friend who...
  7. BlsdMama

    And I'm back...

    Not without a fuss, mind you. Mayo found an antibody (glycine receptor antibody) and wanted to try several treatments for limb variant stiff person syndrome. Alas, nope. I felt the fourth trial improved my balance (quite a lot actually) but they can see no improvement, plus, everything has...
  8. C

    Mood changes

    Hi all, This is sort of an update post (last post was in the Newly Diagnosed) but I wanted to move my thread to a maybe more appropriate category. My husband has gotten a second opinion from the chief neurologist at the University of Münster in Germany, where he is from. He was also able to...
  9. C

    Levosimendan

    The clinic called and asked me if would be willing to take part in the Orion (levosimendan) phase III trial. Just wondering if anyone here had any experience with it...
  10. C

    Limp onset with possible breathing problem?

    Limb onset with possible breathing problem? my Dad had a hard night last night. He explained it to me as he woke up with twitching in his rib cage and back and shortly after had shortness of breathe. He says he feels today like it’s hard to take a full deep breathe. A side note is that...
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