Hey Samantha! The article link on vitamins was very interesting. I have tried multi vitamins too but for some reason I seem to get an allergic reaction from...
Hi Ron!! I am sorry that I did not respond to your message right away. I first read your message almost a week ago now. First, I must say that it is nice to...
Dear Bryan, My name is Laura Rufibach and I work for the Jain Foundation. The Jain Foundation (www.jain-foundation.org) is a non-profit organization dedicated...
I just want to say how awesome it is to see so much activity on this site. It is so awesome to hear everyones story. This is finally giving me hope in a very...
Thank you for sharing your story. I can relate with you and the being depressed. I still can't believe that this has happened to me. I wonder if I ever truely...
Bryan- Here is what I know about dysferlinopathy, dysferlin, and muscle enzyme levels. Dysferlin and muscle enzymes are two different things. Dysferlin is a...
Hello everyone, I am really excited to see so much activity with the Group. It is really encouraging to see so many of you living productive lives. FYI: My...
Hi everyone, I haven't written in a long time but the recent activity it's made me want to write in. I'm 28 years old and was diagnosed with Miyoshi Myopathy...
Thank you!! I am familiar with the jain foundation. How fortunate are we to have such an amazing advocate on our side? With the support of my family we are...
Hi Rebecca. I have a little knowledge about this disease and how it effected me during my pregancy. I had a slightly complicated pregancy. I started to go...
THANK YOU!!! THANK YOU SO MUCH!!! I am crying now just reading what you have wrote. I thought that there was light at the end of the tunnel, now I know there...
Hi Miriam! Thank you so much for responding. I have had the same tests and muscle biopsy. My doctors in the beginning gave two ideas for diagnosis and that...
Hi! I'm Ron and I'm from Southern California and have never met anyone else with Miyoshi Myopathy or LGMD2B. I first noticed that I couldn't stand on my toes...
Samantha - I'm glad that you're a part of this group. It's always comforting to learn that others experience the same things. On a personal note, my wife and I...
Thank you for posting Suzanne, really good to hear something positive. I've just turned 30 and may want to have children myself one day... so I would be really...
Hi I'm Suzanne, from Surrey England. I'm 39 now but started my symptoms back in my early twenties. I just wanted you to know that it's not the end of the...
Hi, my name is Miriam.. I am from San Francisco, about to turn 21 years old. I started to notice signs of weakness during my senior year in highschool as well....
Hello, my name is John The funny thing is I am originally from Minnesota. I now live in Arizona and have met no one with my condition here. I too am 24 years...
Hi, my name is Samantha and I was diagnosed in March of 2007 with LGMD2B at the age of 24. I first started showing signs of weakness at the age of 20 but...
Marian: After the preliminary diagnosis at a local hospital, our daughter was given two choices of locations for treatment for LGMD2B. The two choices were...
Hello Karyl, I haven't heard of anyone being treated for LGMD 2B at the Mayo Clinic. Could you share with us what approaches are being used? I'm currently...
Unfortunately, I have a bad habbit of not following through on things...I haven't taken those two items long enough to really notice a difference. I should be...
Thank you so much for replying. We first noticed a few signs when our daughter was 20 but they came so slow, then all of a sudden the symptoms worsened and she...
I was diagnosed at age 18 when I first started to notice signs of this disease. I am 24 now. I have Miyoshi Myopathy which is the other type associated with...
Can anyone please tell me if they have had any success in the treatment of Limb-Girdle 2B. Does physical therapy help? Does a vitamen regime help? We are...
Hello Lisa (and Laura): First of all I want to apologize for my poor English. I`m writing you because I have a similar case to yours. I’m from Spain and 10...
Dear Lisa, My name is Laura and I work for the Jain Foundation, a non-profit foundation in the US that is dedicated soley to helping find therapies for LGMD2B....
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