Hello Thomas… I am not sure if this is in the same ball park… but I was experiencing progressive dysphagia and eating and swallowing became very difficult and even fearful. At age 63 years, 1 year into rapamycin - 6mg once per week, it is gone. Can eat anything… dry with no liquid. My son had similar issues at age 30. He started rapamycin… 3 months later…his swallowing and my swallowing issues completely gone… seemed to be neurological. Pretty sure it was the rapamycin
I can imagine it must be scary to feel you’re becoming unable to swallow food. I appreciate you sharing! I’ve been on the fence regarding starting… Generally pretty skeptical when it comes to medicine, but rapamycin also just seems to do wonders for a bunch of folks.
Most people here experience few and only mild side effects and neutral to positive effects of rapamycin.
I never heard of CMT only of Charcot’s foot (unrelated to cmt, just discovered by Charcot too), so it’s probably pretty rare.
Rapamycin probably won’t do you harm and might help but I don’t think anyone here knows. Since you look very lean and were already willing to do 2 week water fasts I think there’s not much harm in trying rapamycin instead…
Regulating PMP22 expression is a potential option of a “cure” - I suppose increasing autophagy could potentially work to bandaid it but nothing definitively afaik. This is something you need to talk to an expert researcher in CMT.
I’m also just curious about anecdotal stories because most of the studies I’ve found that support my taking rapamycin are based on mice models. For the longest time, the scientific community didn’t even think the myelin sheath could be regrown.
I’m pretty sure it depends on who you ask in terms of what can be definitively not regrown. I know a few folks in the scientific community that think entire limbs can possibly be regrown almost 2 decades ago. I wouldn’t say they’re “wrong” in terms of the possibility.
CMT overall is pretty rare anyways but I hope you are able to find an anecdote. I’ll also point out most people tend to be taking many different things.