hi katie, sorry to hear that you're feeling so lonely. i'm 26 and was recently diagnosed with a rare form of muscular dystrohpy called miyoshi myopathy. the ...
I'v been a member of the group since 2001 and look in every once in a while to see what's going on. I'm a 55 year old male with lgmd. I haven't been re...
I am 22 and have had muscular dystrophy for about 8 years. I have recently been informed that I have Dysferlin Dystrophy. I don't really know much about it...
Hi Katie I'm 36 now & have had symptoms since I was in my early twenties. Have been
diagnosed with Miyoshi Distal Myopathy for about 7 years now. My condition...
Re: [dysferlin] testing? Robert, You may be able to use some of your past biopsy to get a clearer diagnosis.Dr. Jerry Mendell ( phone and address below) in...
Robert, A commercially available blood test now exists to determine dysferlin deficiency. I had one completed about 2 years ago just to confirm my diagnosis of...
Elizabeth, Lary and Mathew, thanks for the information. I believe I will try to get re-tested in the near future. It's time I know what the real defect is....
http://www.medicalnewstoday.com/medicalnews.php?newsid=27544# I think one of the member of this group is in a trial for the miostatin blocker. interesting...
Thanks for posting the link, it is interesting, and it will be exciting to see what the results of the clinical trial will be. Also someone pointed out to me...
there is an other link for the same article. http://www.eurekalert.org/pub_releases/2005-07/uomh-cp071205.php and another link for general md articles. ...
That'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...
I've been a bad moderator lately. :-( Somehow, I stopped receiving the notices of members trying to post. I think what had happened is that I had been using an...
Yes, I thoroughly agree that it is very hopeful, thanks for sharing it with the members. I had come across this abstract a few weeks ago. Since then, I have ...
Hi. I agree that anything new is exciting. I was previously diagnosed with Polymyositis & had a week long course of Intravenous Immunoglobulin as part of...
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...
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...
Amanda, That's very interesting, and thanks for telling about your experience with IVIg. Since right now we're trying to figure out if some type of trial is ...
Hi Brad, I can't remember if Dr. Karpati treated other dysferlinopathy patients with IVIg but I wouldn't be surprised if he had. He is among the world's...
I was initailly diagnosed with polymyositis and so my doctor recommended IVIG treatment. I believe I had 2-3 treatments and personally, I don't think it made...
Hey everyone my name is Miriam and i am 18 yrs old. I live in San Francisco and i recently got diagnosed with LGMD about 2 months ago after 4 yrs of waiting to...
Kingpin, I have a question, when you were diagnosed with polymyositis, were you put of steroids before IVIg, or was IVIg the first treatment you tried? Thanks...
hi everyone, all of the recent postings have given me hope and came at a good time. it was nice to be reminded that i'm not alone. i was wondering if anybody...
I have miyoshi, Bryan. When they first discovered the dysferlin gene, I was quite surprised that a type of LGMD was the same thing as I had. I'd never paid...
