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...
I am a doctor, although not a neuromuscular specialist. But even among neuromuscular specialists there is alot of controversy on how to manage this disease as...
I agree. I have tried CoQ10, and am taking it now again at a higher dose then before. I am also trying Selenium now and intend to try Creatine again (I tried...
I have fallen too, many times. So far I have been very lucky, no busted bones. Knock on wood. Thanks for your input on the meds. ... From: Thayer, Joshua...
Yeah, I've tried CoQ10 and Creatine off and on myself. I didn't noticed any change while I was taking it. However, I noticed that getting enough sleep has...
I am a 34 year old male with bilateral calf wekness that developed sometime in the last 4-5 years. Specifically in the medial gastroc. I have underwent CPK...
Again, i'm not a neuromuscular specialist but I would think that you would have some neurological manifestations (pain, sensation changes, etc) if you had a...
In following up to Ron's comment, it can be tricky to get a diagnosis from protein testing in blood alone. At the moment, it's difficult to do complete...
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