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...
Thank you very much for posting this. It definitely made my day. ... From: vlacas2002 <matanas@...> Subject: [dysferlin] Clinical trial for ACE-31 To:...
Hello everyone, my name is Christina Ray,39, and I live in S.E. Oklahoma. I FINALLY got my diagnosis yesterday at the MDA Clinic in Oklahoma City. I have...
Welcome to the group Christina. wondering how you got diagnosed, with biopsy or dna analysis? ... From: Christina Ray To: dysferlin@yahoogroups.com Sent:...
Hi christina  My name is Patty I'm 28 from Texas and was diagnosed last november with the same thing. Although i know what a bummer this is. keep your...
Just wondering if I registered correctly and if any one has gotten my original posting. Christinabelle Just wondering if I registered correctly and if any...
Christina, I am 56 will be 57 years old this year. I started having problems in 1985. I have gone through 2 biopsies and many tests and have not had a...
Hi Christina, I'm Brad, the group moderator. Welcome to the group. The reason people didn't get your post for a while is that for new member, I have the...
Hello everyone. I have been reading thru the group postings trying to get to know everyone a little. I couldn't help but notice that most of you are in your...
I have a couple of things I would like to say about being in a wheelchair. I have pushed my Dad around for years never realizing how much different the view is...
Hi everyone, I'm AJ, I'm 25 and I live in Wisconsin. I was diagnosed with limb-girdle dystrophy around 2002, and then later found out it was Myoshi distal...
AJ, At 33, I was having trouble coming up out of a knee bend. My grip was weak and stairs were beginning to be difficult. I joined an aerobics class and also...
Yes, it's me again checking to see if I'm posting to the message board correctly. I typed two emails on the group site earlier, but I'm not sure they got...
we get the emails Christina. welcome to the group AJ. I am 48 and still walking (slowly), stairs very dificult. I found swiming is the best for aerobic...
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