What is the MS Society doing?

[teacher4life]

My husband and I volunteered for the MS Society in NC from '88 - '95. In the 26 years since my diagnosis, I have not seen significant progress in identifying a cause, much less a cure. Neurologists treat us like guinea pigs. The medications are questionable at best. This disease continues to take us away from our new careers at early ages, and to deny us active, enjoyable and normal lives. Who, or what, is benefitting from all the funding for this insidious disease?

[nes]

yeah, i kind of feel the same way although i don't have as long a history as you. i recently took my partner to the northwestern school of medicine to participate in a phase 3 trial with dr. richard burt. he treats m.s. patients with chemotherapy to eradicate most of the immune system and then administers the patient's own stem cells (from bone marrow) back. it is not as risky as other similar treatments, because he doesn't use as much chemo to risk death. nobody has died, but the majority get much much better.

my partner left her wheelchair behind after treatment. she is off all of her dmds, feeling the best she has in years, and is back to walking and driving with little limitation. it's as close to a cure as i've seen. but, you know what? i had to find out about it by searching clinicaltrials.gov. even though the phase 3 is well underway and years of data show nothing but great results, there is little to no coverage in the mainstream m.s. world. sad b/c without this stem cell transplant, my partner would literally have been in nursing care at 34! now she is getting back to living an independent productive life.

[marti]

I think they should spend less money on mailers and advertising and put it toward research. I don't need to hear from them every month or read all the magazines they send. I want to see some progress!

[rdmc]

My husband and I volunteered for the MS Society in NC from '88 - '95. In the 26 years since my diagnosis, I have not seen significant progress in identifying a cause, much less a cure. Neurologists treat us like guinea pigs. The medications are questionable at best. This disease continues to take us away from our new careers at early ages, and to deny us active, enjoyable and normal lives. Who, or what, is benefitting from all the funding for this insidious disease?

Didn't know if you'd seen this thread, but it was up for quite awhile and had a lot of responses. The poster was pretty much asking the same thing as you are:

http://www.msworld.org/forum/showthr...highlight=cure