Having problems with message search?
Four years ago, when I was diagnosed with LGMD 2B, Dr. Karpati from Montreal prescribed IVIG. I had two back to back treatments, but then I moved and my new doctor didn't think it was a good idea to continue. What's interesting is that althought I didn't see any immediate results from the IVIG, two weeks later, I experienced a huge gain in strength. It was so noticeable that I went up and down a whole flight of stairs five times without holding on to the rails, just to test myself. I was also able to get up from the couch with little effort. At the time I thought the improved strength was the result of an acupuncture treatment I had received for the first time that same day. But my strength eventually returned to its weakened state even though I continued with the acupuncture treatments. I've always wondered what caused such a jump in strength. It lasted only a week or
so. Maybe it was the IVIG.
I'm not sure this information is helpful to anybody, but I thought I would share it just in case.
Amanda
Sharon Hesterlee <shesterlee@...> wrote:
I've been lurking on this list--too busy to post anything lately! Although granted, it's hard to define "lurking" on list with such few posts.Brad Williams asked me about the IVIG trial and I wrote to the investigators to get some details about their manuscript. They finally wrote back (the main investigator had been out of town). It sounds like the woman treated did have a genetic diagnosis of dysferlin deficiency. We may invite the investigators to apply to MDA for funding to do a small pilot study (will likely take place in Germany because that's where the investigators are located). On the other hand, if I can find any US investigators interested in following up on this single case, we may be able to fund something here. The results were intriguing, but they only treated a single person.I'll keep this group in the loop if we do manage to follow up with a pilot study.SharonSharon E. Hesterlee, Ph.D.
Director of Research Development
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
(520) 529-5433
shesterlee@...-----Original Message-----
From: dysferlin@yahoogroups.com [mailto:dysferlin@yahoogroups.com] On Behalf Of AIR-COM
Sent: Friday, May 19, 2006 6:29 PM
To: dysferlin@yahoogroups.com
Subject: Re: [dysferlin] A hopefull trialThat's good news...I am wondering what happend to the rest of the group...Nobody posts lately. Maybe everybody got cured and they run away...Was a lady in the group who participated in the myo -29 study from wyeth. I am wandering how is she doing.RegardsMathew
YAHOO! GROUPS LINKS
- Visit your group "dysferlin" on the web.
- To unsubscribe from this group, send an email to:
dysferlin-unsubscribe@yahoogroups.com
- Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
All new Yahoo! Mail -
Get a sneak peak at messages with a handy reading pane.
Offline 
Send Email