KellyandKay
Member
- Joined
- Aug 19, 2008
- Messages
- 12
- Reason
- Lost a loved one
- Diagnosis
- 9/2004
- Country
- US
- State
- OK
- City
- Caddo
I am glad it has helped you. My wife, Kay, started using it when she was first diagnosed and had no side effects. Our insurance covered it, except for a small co-pay. The researchers are looking at any and everything that might cause, or help, ALS. They start with analysis, then go to a mouse study, then to ALS patients. Kay participated in a clinical trial of minocycline. The study showed it didn't help and might even be harmful in ALS. She had severe reactions to the drug, but she had no regrets. Even negative results help the research. We need a breakthrough on this disease, and I hope it comes soon. Until a decade ago, ALS was an "orphan disease", which is a term applied to diseases affecting relatively few people. Then, the research community decided that any drug or treatment that helps ALS might also help in Alzheimers and the other neuromuscular diseases. If that proves true, it will mean a huge market for the product. Alzheimers, etc., progress slowly and vary greatly from person to person, so research with those diseases is complicated and takes a long time. Rapid progression is the worst part of ALS, but it does mean that research takes less time, and a LOT more research funding is available now for ALS. To clarify my comment in the earlier post about aspartame and other chemicals or diet supplements, I personally would try anything that might help.