i have written a post before about a similar topic but i see that there are many new members and i would like your thoughts about my situation. My dads side of the family has LGMD 1A and he himse...
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Hey everyone, I'm sure there's a thread on here with this exact question, but here goes again. How do you deal with the way certain people respond when you tell them that you or your child has M...
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I’ve been kind of quiet here lately mostly because I just didn’t feel like talking. I’m not depressed; I just feel kind of blah. And frustrated would be a good word. I’ve been going through a tran...
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Our son, 8, just had this CK muscle enzyme test done because we are trying to find out where his obvious muscle weakness comes from. The normal range of this test is between 50 and 150 - our son's...
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I am in the process of starting a non-profit organization. I am struggling with what the main source of service should be. I need help from others living and caring for people with muscular dyst...
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has any one heard of this a few family members have it ? possible hubby could as well , they are saying both parents must have had to have it as well. anyone help please thanks blu
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This is kind of a vent, but I was wondering if anyone else has experienced problems like this.
Four years ago, my family moved from a major metropolitan area (Northern Virginia) to a rural are...
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I am a 47 year old male with undiagnosed neuromuscular disorder.
My father, two of his cousins and two of his uncles all walked with canes and walkers from their late fifties on. All males, none...
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My dad and my grandpa both had it and I was told that I have it. I would have problems when I was in high school and I would be racing in track and fall flat on my face cause my legs wouldn't go ...
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I can't get out and exercise or walk like I use to and as a result I'm gaining weight, and that of course makes it harder on my muscles. I'm also having a tough time with constipation.
Jus...
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My brother's birthday is today..He had DMD and passed away 25 yrs ago..I was 8 yrs old then,(im now almost 33) but I still remember and miss him..My mother is having a bad day, I spoke with her ea...
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Based on posts I'd read here, I decided a while back to start taking CoQ10 to see if it made any difference. I found an online site that had a super sale on it and got quite a bit. I decided to ...
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Hello, my name is David, i am from Rebublic of Georgia, i hav broather with fshd. i have any questions:
1. On which stage is the medicine concerning therapy of FSHD disease? As far as I know som...
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The MYO-029 thread was getting rather long so I thought I'd post this development here.
It not great news. The MDA website issued two recent statements. On 03-11-08 it issued "Wyeth Won't Dev...
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My neurologist has given me a diagnosis of LGMD. I have not undergone any testing to figure out which one because frankly, I can't afford to spend a lot on these tests.
Does anyone else have ...
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So we got a diagnosis.. I have LGMD 2A. I thought I would feel relieved after I found out... but I don't know. I guess it's all still a mystery to me.
How did you guys feel when you first got...
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hello everyone who reads this, my son greg is 14 and has dmd ive been through what i think is all. we recently got the news he will be going into the hospital on may 16th to have surgery to fix hi...
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Hi All
We have a 3 week old with cmd, and the Doctors are having trouble with feeding via NG tube, has anyone had these probs, and if so what solution did you or the Doctors come up with. She...
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Hi....
any MD patient using Cozar (Losartan potassium)?
...
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Hi, My name is Mike and I have Myotonic MD. I have been having problems for about 5 years. I just turned 24 this month. I live on my own and I work 45-70 hours a week. I like the idea of staying i...
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Hello,
My daughter has just recently been diagnosed with LMGD 2A (calpainopathy).
I have been working with the MDA and they have been a wonderful resource, however, I cannot seem to fin...
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Hi to all of you. I had my appointment with the neurologist (I know I already told you that). There was a brisk or exaggerated reaction to the reflex test at the patella (knee reflex) and at th...
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Hi
Last time i sent an email to one of a stem cell therapy centers in Germany and wrote them about my LGMD.I got back their reply as:
...............................
Mr Malik,
we have so...
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My 44 year old daughter was diagnosed with MD last year and she can no longer sleep in her bed because the mattress causes so much pain. Is there an organization that could help her with this pro...
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i got the Aldolase test report along CK test
i m worry becoz Aldolase is also abnormal i.e 20
what it means?
...
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