bear1973
Distinguished member
- Joined
- Mar 12, 2015
- Messages
- 129
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- CA
- State
- Ontario
- City
- Barrie
I've spent a fair bit of time reviewing the info at ALS Untangled, and from what I know, it's a reputable site for PALS re: alternative methods of treatment.
The site dismisses most of the remedies out there, although does suggest that "further research" is warranted on some items - for example: coconut oil, cannabis, and recently, MitoQ.
My question is: If there is some evidence supporting that these methods *might* work, then why not use them (possibly all) with the possibility that they might be making some kind of impact that a later study might prove? The site is pretty clear about the risks, so it's doubtful they would recommend something that might increase progression. I ask this because I figure a) with a disease like this why not...what have I got to lose and b) if I'm willing to spend (with the help of drug coverage) ++ $ on Rilutek, which only slows progression by about 10%, why not use, for example, coconut oil, which costs peanuts and *might* slow progression by the same amount?
Curious to know thoughts out there.
Thanks, Bear
The site dismisses most of the remedies out there, although does suggest that "further research" is warranted on some items - for example: coconut oil, cannabis, and recently, MitoQ.
My question is: If there is some evidence supporting that these methods *might* work, then why not use them (possibly all) with the possibility that they might be making some kind of impact that a later study might prove? The site is pretty clear about the risks, so it's doubtful they would recommend something that might increase progression. I ask this because I figure a) with a disease like this why not...what have I got to lose and b) if I'm willing to spend (with the help of drug coverage) ++ $ on Rilutek, which only slows progression by about 10%, why not use, for example, coconut oil, which costs peanuts and *might* slow progression by the same amount?
Curious to know thoughts out there.
Thanks, Bear