Hello! John has LGMD 2A, but he has the same challenges as people with LGMD 2B. If you haven't already seen his YouTube videos, they might give those of you...
Hi my name is Roxie and I can relate to the muscle pain. I usually have this every afternoon after a busy day. and every morning before I get to the pool. I...
Sounds good to me.....naturally since I live there............I wonder how many of us there are ? ... From: John To: dysferlin@yahoogroups.com Sent: Tuesday,...
You have Miyoshi Myopathy or LGMD2B? My doctor is allowing me to use the conference room on fridays. I don't think that Friday is a good day to have...
Hello! My name is Lisa and I have LGMD 2B. I have problem finding comfortable shoes and I wonder if someone else have experienced the same problem? I can still...
 Hi lisa I Never heard of that but when I got fitted for leg braces the doctor did suggest shoes with a wide back to help with balance, and an almost square...
Hello Patty! The Dictus Band is an orthosis to help people who suffer from Drop Foot. I have a pair of these but I am not comfortable with them yet. I have not...
Hi all, I have had quite a few tests including an EMG which indicated that more muscles are affected than what I first thought. I only thought my calf muscles...
Hi there Donna. I'm sorry to hear that you are going through this as well. In my case, it took doctors 3 years before they gave me a diagnosis. I have had...
I have had numerous tests. Blood test, emg, and other misc tests. The final test was the biopsy. That was the test that determined for sure that I had...
Hi Donna, I agree that you should contact the Jain Foundation about getting a mutational analysis done. Muscle biopsies are typically done to test for the...
I will definitely keep you posted on my progress. I actually registered with the Jain Foundation yesterday and they will be calling me tomorrow to discuss my...
Hey donna! i agree with others that the staff at the Jain Foundation are awesome. I originally had CPKs 10,000+ and muscle biopsies in the legs which showed...
GREAT news! I have located a place to host a support group for Distal MD & LGMD! I will hold meetings at the Glendale Public Library in Glendale, AZ. The room...
soooo sorry I live in Tucson.......... ... From: John B To: dysferlin@yahoogroups.com Sent: Tuesday, August 05, 2008 4:08 PM Subject: [dysferlin] Distal MD &...
First support group meeting on 9/20/08, Saturday at 1:00pm - 2:30pm. Meeting will take place in Glendale Public Library's large meeting room. The purpose of...
John, I think this is a great initiative. I have thought about doing something similar in Boston, and I spoke with the MDA representative, but all she said...
i think teleconferencing or even online video conferencing for people with microphones/cams would be a great idea. ... Providence RI, Stamford CT, Washington...
If you are interested in teleconferencing there is a place where you can get free access to a conference call line so that everyone can call into one place and...
Thanks Laura. That's a great suggestion! Joshua M. Thayer Edwards Angell Palmer & Dodge LLP 111 Huntington Avenue at Prudential Center Boston, Massachusetts...
Does the elevated CK levels remain constant or does it fluctuate. I have been diagnosed with LGMD2B, and wanted to see if any of you have the CK levels...
Hi, my name is Laura Rufibach and I am a director of research at the Jain Foundation. The Jain Foundation is a non-profit foundation that focuses specificly...
I tried it when i was first diagnosed with the disease. Didn't help at all but I got a bunch of side effects from it. There are lots of adverse effects when...
My doctor wants me to take if for a month...I don't think I'm going to take it. I've heard from several people now that this product has only negative...
With all due respect to your doctors, I think it borders on malpractice at this point to prescribe prednisone to patients with dysferlin deficiency (i.e.,...
Dear Joshua,  Thank you for your opinion. I have made my decision, no bad pred for me! By chance have you taken CoQ10 and creatine? If so, did you notice...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
