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Please share your views on the most promising MS studies
Hello everybody. I am trying to figure out the best study options for me to participate in. Can other forum members please share their views on the most promising research studies?
I have had chronic progressive MS [not sure if primary or secondary] for 23 years. I was turned down by JH for the Revimmune procedure. I just started at a research hospital, Wash U. in StL, and I am not sure of what current studies are the most promising, and whether they are available to people with progressive, rather than R-R MS. The JH people said Revimmune would not be good for me b/c I am too far along, but I have always wondered if it had more to do with the fact that I am not R-R, which studies seem to prefer. One other question. I have noticed people here writing about vitamin D. Is that something everybody with MS should be taking or is that to fight the side effects of a study process? Thank you for sharing your knowledge. Take care, John |
I'm PP, notice many things for RRs involve inflammation, and in 7 years I've never had lesions enhance (show active inflammation). Know JH was doing Fingolimod on PP's recently. SP and PP studies hard to find.
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You are using computer - try pp and primary progressive, SP and secondary profression. You sometimes get different results with different word usage.
Keep your doctor in the loop, sometimes they know something.Read forums, sometimes you hear it there first. Hear something mentioned, google it, write it down, remember it.maybe it'll hit clinical trial one day. I knew of upcoming trials at UMM and JH in Baltimore before places and they jnew my name. But by time they came I was 6.5 on EDSS. My doctor at JH was involved, tried to get me walking. Didn't work. Networking helps, Twitter maybe???? I can travel and stay with family some places, keeping idea of friend of brother involved in major stock share in stem cell company to promote me ASAP if trials come up, can stay with other family. This is work, sometimes I take a vacation from looking, then get all involved another time. Good luck!! Post here, you're part of our loop!! Being 6.5 on EDSS (Non-ambulatory) makes me ineligible. Most clinical trials seem to measre sucess on physical progression in walking. |
Thank you both, kicker, gonnamakeit. I too am fighting an uphill battle to get in trials, b/c I have been in a wheelchair for 9 yrs, and have not walked without assistance for 2 yrs. Yesterday I was told that even though I am enrolled in Medicare, my primary insurer was still able to deny access to the doctor at Wash U. Sometimes I find American health care exasperating.
Take care, John |
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To the best of my knowledge, there is nothing out there that will help you and others like you (me included). Even the current trials are not focusing on neuro regeneration, which is what progressive people must have to improve. I also think that if you enroll in a trial that no payment is charged either you or your insurance company, so worrying about that is unnecessary. Getting into any trial in your current condition will be the major hassle. gmi |
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Btw, love ur nick. :) John |
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Those of us with the progressive types have to be repaired in order to get better. So far there is nothing that will fix the problems caused by neuro degeneration. gmi |
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Don't RRs get damage to their nervous system and brains that need repairs too? If there is a method to use stem cells w/o side effects, will the disease attack the new growth? Do we need chemo AND stem cells? John |
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