-
Update us on the research and trials you are in!!
-
I started the cytokines trial trading to arizona, too early to say if there is positive effects minimal side effects. This drug is to help with muscle strength. We just have to keep on trying.
-
I was diagnosed 6 years ago with ALS Bulpar Onset. Like many of us the phrase: you better go home and get your affairs in order cause you only have 2 to 5 years to live. Although after reading the books, watching the movies, and talking ALS for 4 years, yes I am grateful but at the same time very sad of the progression of many. The first 3 years I could not get into a trial because of my age (68) and lack of progression. I do not believe there are any trials for PLS!!! I continue to pray for everyone with ALS and I do my share to advocate for anything that could be of help for those suffering with the horrible disease.
-
I’m in the Mass General C9 ALS/FTD Transposon Trial at the Healy ALS center. I couldn’t be happier. The study staff are so amazing that I look forward to seeing them (even for lumbar puncture). Next week I will be informed if I have been on the real drug or the placebo. Starting then if I was on the placebo, I get switched to the real McCoy.
Not sure how I feel. If I on the placebo then I can say “thank God now I will get some benefit. If I’m on the real drug now, guess I will say, imagine how much more I would have declined if I was on the placebo.
Log in to reply.