Last post Mon, May 05 2008 3:12 PM by Michele McHenry. 3 replies.
I am African-American and I am assuming that my ehtnic group was not inluded in the research. I was diagnosed 23 years ago. "The research was interesting but was not useful to me. Thanks!
I was diagnosed in May of 2003. Since you've had MS for 23 years, you probably know a lot more than I do but I am hoping I can help you in some way. I originally tried taking Avonex which made me so sick I decided the disease was not as miserable and I quit taking it. Even while I was on Avonex I continued to deteriorate. Then I tried a drug called LDN - Low Dose Naltrexone which a friend, who also has MS, suggested. It works by tricking your body into making extra endorphins. It is a little tricky adjusting the dosage but it saved my life. I am doing better now than after my first execerbation. I still have to be careful not to overdo it but I haven't had an execerbation since Feb of 2004. My flare ups appear to be directly related to how much stress and or fatigue I'm experiencing.
In my opinion, statistics aren't much help because in order to get the right answers you have to ask the right questions. Scientists have been heading down the autoimmune disease path for some time and although I think there is an autoimmune factor, I believe it is mearly a part of the puzzle. Autoimmune disease is a symptom of the actual cause. I say this because taking LDN, I watched my immune system slowly improve and stop attacking my brain. The more fatigued I get, the more likely I am to have a flare up because my immune system will again malfunction. I have not been dealing with this as long as you but I wonder if fatigue is your main problem as well.
I just wanted to share that with you. I hope I have helped you in some way.
Penny
gdamon: I am African-American and I am assuming that my ehtnic group was not inluded in the research. I was diagnosed 23 years ago. "The research was interesting but was not useful to me. Thanks!
Looks like there are trials done for your ethnic group as well as other ethnic groups. IMHO, it make no sense to do a trial on only one ethnic group when it affects all races. But, it seems other ethnic groups such as AA seem to suffer more severe symptoms.
The abnormal immune response that leads to multiple sclerosis, or MS, is stronger in African Americans than in whites with the disease, new research indicates. This may partly explain why blacks often experience greater disability.
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1852&CFID=6609579&CFTOKEN=43940595