Hi I'm Suzanne, from England, & I've been diagnosed with Miyoshi Distal Myopathy. I have a very suppotive husband, a son of four years old and a one year old...
Hi friends Do you have any update on this question about how to detect the dysferlin in the blood? I have a nephew that had a problem of MD and we are trying...
Hi I'm Kendra, I'm 32 years old. I live with my husband of 6 1/2 years and two children. We can chat if you like. Wishing you Love, Peace & Happiness Kendra...
I feel quite alone, for a while i have known there is something wrong with me i feel weak alot of the time,ihave not been diagnosed but think that i may have a...
You should consult a neurologist. Or better yet, contact your local Muscular Dystrophy Association to locate an MDA clinic in your area. Wishing you Love,...
Hi all, I wanted to introduce myself. I have Limb-girdle, not really sure what type it is. I was diagnosed at age 7, had a biopsy at age 12. Needless to say...
hi everybody, my name is bryan. i'm 24 and was diagnosed with miyoshi myopathy earlier this year. still trying to figure out what it all means. i feel pretty...
Hi Bryan, I'm also 24. I was diagnosed with Limb-girdle MD when I was 7. What I can tell you is that having MD is a constant adjustment, I guess for me...
In reply to Bryan I was about 25/26 when I was diagnosed with MIYOSHI. (I'm now 35) I was also quite sporty - used to play squash & badminton. I know how it...
What a great resource for my recent diagnosis! Thank you. I have been chasing the wrong thing for over 10 years now. I had high AST/ALT counts (liver...
Hi, my name is Ivetta and I also have a dysferlinopathy. I'm 20 years old and my brother is 22 years old(he also has a diagnosis of dysferlinopathy). We are...
Nisan and Ivetta, I am very sorry to hear of your recent diagnosis. It must have come as a big shock. From my research, there are different levels of severity...
Hello everyone. Just wanted to share that on February 17, 2005 I became the first human to (hopefully ) receive the drug myostatin. This is supposed to be a...
Hi Kendra, That's wonderful news that you're enrolled in the clinical trial. I know someone at Johns Hopkins who is researching myostatin, so I found out about...
Hi my name is Donna and I am 25 yrs old and have Limb girdle. I have known since I was 16yrs old. I still can walk but have a lot of problems gettin up on my...
Donna, I am 50 , female and have LGMD2B. Maybe you know that there are many kinds of Limb Girdle MD. the web address that is conducting the clinical...
Yes I have 2b and I am just like u I can stil walk but can't do stairs with out a railing. I have a hard time getting up from sitting postion. Yeah I going...
Hi Donna, It was nice talking with you last night.l I hope we'll stay in touch and support each other through this. You have a great attitude! As I said my...
Hi Elizabeth,\ Thank u for callin me and giving me that info. I will keep in Contact with u. I think we could be great support foreach other cause not a lot...
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....
