One year update on Northwestern clinical trial blog (Marc Coppins)

[ActiveMSers]

Marc Coppins was transplanted at Northwestern last May as part of Dr. Burt's clinical trial and his wife Barb has put together a blog for updates. She has also included a section on the blog for tips on Chicago living for other future transplant participants. He's doing well after a year.

Since Marc's Stem Cell Transplant on 5/17/11, he has seen tremendous improvement in his RRMS* symptoms. Here's a list of just a few:
1. He lost double vision that he had for 12 years!
2. He can drive again so has gained much of his independence back!
3. He has not used a cane at ALL since leaving the hospital.
4. He used to be numb from the knees down thru feet in both legs and now is gaining quite a bit of feeling back in them!
5. Used to have constant pins & needles in his back, like barbed wire being tightened around him, and that has been all but eliminated.
6. He hasn’t had hay fever (an unexpected side effect).
7. Driving to the M.S. Support Group on 09/26/11, Marc said, "I almost feel whole again...I don't have ANY numbness!"
Please help us spread the word that there IS hope & help out there for people who have RRMS* as well as many other auto-immune diseases!
*RRMS - Relapsing Remitting Multiple Sclerosis.

http://www.marcstemcell.com/

[Jodes]

MS symptoms non-reversible???

Hi, Dave. I was just reading some of your posts about your stem cell transplant you stated that it could help halt MS but not reverse it/symptoms. So, i was just reading Marc's stem cell transplant journey and it sounds like MANY of the MS symptoms he's had for years have now gone away or been all but eliminated. So, do you consider this a 'reversal' of symptoms?? I'm just confused a little.
Thank you, Jodes

[ActiveMSers]

Hey Jodes, modest improvement is common and large improvement is definitely possible with this treatment, but it is not the norm. In one long-term study, fewer than 50% of patients showed improvement in terms of EDSS, although that may be higher in RRMS only. And the gains may not be permanent. In that study, they lasted an average of 2 years (although some still have gains years later).

That said, it is the only MS treatment that has been shown in clinical trials to improve EDSS scores by 1 point or more. I improved about 1.5 points, from 5.5 to 4.0. Marc's self-reported improvements have been substantial but I don't know what his official EDSS level was before and after the treatment. Unfortunately, all self-reported gains without clinical testing are a bit suspect (including my own) as the placebo effect can have a huge influence, re: CCSVI.

Does that make it clearer?