Dear dysferliners, I've posted in the group bookmark a few links which might interested some of you about MD infos. One of them is the URL of the dysferlin...
Dear sophareth and all, Ok, to avoid all confusion, you can call me Nat all ( shorter, et cuter than Phalevi, duh?) Just checked the scheme in the photos...
I'm posting this message for natalisan, who is currently having internet connection trouble :-( The decrypthon acts as a sort of screen saver, to have your...
A friend of mine, Ricardo Rojas, has proposed establishing Sept. 17 (the birthday of Dr. Guillaume Duchenne, who gave the first clinical description of the...
Hi everyone! Nice to be back! Thank you Brad for filling in my last message for me:) Concerning RNA interference/ repairing. An intro to this new kind of...
I was wondering if anyone in this group knows any information about current diagnostic tests available for LGMD type 2B. I've read that there are a number of...
Hi Lucinda, The diagnostic test currently done involves testing for the presence of the dysferlin protein, using an antibody which recognizes dysferlin....
Thanks Brad for the very helpful information on diagnostic testing. I've been wondering if anyone in this group has had a similar experience of rate of...
Hello All My name is Aman and I have had a similar experience. In high school, I had elevated liver enzymes but no symptoms. I weightlifted, ran track, and...
Hello, I just found out that a member of our family is diagnosed with Miyoshi Myopathy. How can I help? __________________________________________________ Do...
Hello all (esp. Lucinda), Because of recent efforts to get a DNA analysis of my dyferlin genes--not to had currently, unless anyone knows otherwise (if so, ...
Hi everyone, An article has just appeared in the scientific journal Nature which reports some very interesting results on the dysferlin protein. The ...
Hi everyone. I am glad to find this group, and I look forward to swapping thoughts, questions, info back and forth. The main thing I want to address is rate of...
Hi yall, Children's Hospital in DC, which has a large and reputable research center, is going to be studying DNA sequence/mutations in the dysferlin gene. I'm...
Hello everybody, I'm so relieved to find a newsgroup dealing with dysferlin deficiency. I'm very interested in what others are going through. Thank you Brad,...
Amanda. My name is Mathew and I havent introduce myself to the group yet.I am a resident of Ontario, and I have been diagnosed (sort of...) with Myoshi...
Hello Amanda, I actually was diagnosed with LGMD 2B a couple of years ago as well. At first, Doctors told me that I had Polymyositis but I did not respond to...
Hello! I haven't posted in over a year, but I do try to check in regularly. I guess there aren't many of us out there so this group is destined to move very...
Hello, I just wanted to thank everybody who responded to my email posted in August. I may have been very slow to reply, but I greatly appreciated everybody's...
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...
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