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Have you applied for Expanded Access for an experimental treatment?
“Expanded access (or “compassionate use”) gives people access to investigational drugs under certain conditions outside of a clinical trial. The FDA always prefers that people participate in a clinical trial first to ensure they truly have no other options.”
There are a number of treatments in the pipeline, and some look promising. Therapies and treatments such as Tofersen (targeting SOD1 mutations), NurOwn, AMX0035, NU-9, Ravulizumab-cwvz.
Do you know of other treatments and if they target a specific ALS population? Has your doctor applied for Expanded Access on your behalf? Have you inquired about experimental treatments?
What are your thoughts? -
1 Reply
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Hi,
I am currently on CY-5032 clinical trial. I am on year 2 now. No side affects at all. It’s supposed to expand your life. I was diagnosed 2.7 years ago. I am also still working. I have muscle lost in arms and hands. But walk almost like normal. I also take around 10 supplements. Vitamins B, B12, C, D, E, Zink, Cal-Mas Plus, Cod oil, Diglot Forke and Dianna Protocol.
I first noticed weakening when I went out to surf in my home town of IB Imperial Beach, CA and could not lift myself on my Surf Board. From then on I just Body board and didn’t thin nothing of it.. Then the same year I saw my cousin and she said I Look different am I okay. I just told her I am working out harder at 24 hr. fitness. Then the next year I thought I had carpal tunnel syndrome. After a year passed that’s when I decided to see my doctor and she recommended me to see a neurologist.
Prayers!
Mel McBroome
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