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...
Hi Miriam, Welcome to the group. Sorry to hear of your diagnosis, and also that you had such a difficult time getting it. Actually when I first had symptoms,...
Hello, my name is John. I tried to join the army and I couldn't pass the duck walk and stand on my toes tests. I then went to a neurologist who said I had...
Thanks, I'll keep that in mind. = D I'm curious, at age 36 are you still able to walk ok? I'm worried that i won't be able to walk in a couple of years ...
I'm 37 & have Miyoshi. Walking is very difficult now, mainly due to balance. I can walk short distances using an elbow crutch but I prefer to have someone with...
Amanda thank you for sharing your experience.It is very important and im agree.I think it was ivig.I want to ask some quesions.Can you reply at here or to my...
That is correct, at the time my condition was not 100% confirmed. My biopsy showed a possible depletion of the dysferlin signal. As my file says: "In view of...
I was put on 60 mg of prednisone first, then methotrexate (sp?) and then the IVIG teatment. My CPK levels did not go down at all. The only thing that worked...
I wanted to ask everybody about something: One type of mutation is a "premature stop codon" essentially, a DNA sequence which tells the cell (prematurely) that...
Hi everyone, It's been good to hear your voices and see some encouraging information coming across lately. As far as the DNA analysis, my genetic counselor at...
Hi Ron, This is a really interresting point. I'm affraid I don't know why either. I work in mental health and the case is the same with for example,...
Hi, I'm so glad this group exists, given that this thing is so rare, it's the last thing I expected to find but I'm so glad I did. Thank you to everyone who...
Hi Ron, Yes of course you're right about schizophrenia, as soon as I posted it I realised I had been rather over general and misleading about similarities with...
