i got this frm a friend's friend. apprently this disabled guy --uses a power chair. he is working on a masters in disability health. he needs some help...
No doubt -- to your point about exercise. It is good for the body. I would also say that good nutrition is vital. I'm talking about almost completely doing...
Hey everyone ! How is everyone doing. This might sould weird but has anyone had a hernia? I fell and developed one. I now have to have surgery. Has anyone else...
My 5 year old son has proximal muscle weakness, CK levels are at 4800, his liver enzymes are elevated and his muscle biospy showed mild muscle myopathy. He...
I'm in love with a man who has dysferlin muscular dystrophy. He is 20 and told me he was diagnosed when he was 18. I tried to find something on the web about...
Hi jschwab547, I'm sorry to hear about your son's problems. These sorts of problems can be very frustrating to diagnose and I can appreciate your frustration...
Hi Kat, Thanks for writing. Generally the progression of dysferlin-deficient muscular dystrophy is fairly slow, and I'm not aware of any reports that it...
I have LGMD2B, i was diagnosed about 4 years now (present age 21), but lately the symptoms of the disease have become more and more prominent and range from...
Hey, My name is John. I have Miyoshi Myopathy. I started noticing a difference in my leg strength when I was 17. I was used to play football and workout...
Hi I'm Patty and i too was recently diagnosed, but realized the unability to do stairs run jump tip toe ect. about 3-4 years ago.  Since my sister and i...
Hi Miriam, I understand your situation. I too have LGMD2B and have gained a LOT Of weight (I was misdiagnosed and treated with steriods) I went from a size...
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...
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