I need to vent ! Able bodied people just can't understand, try as they may. Walking has been hard for 2 or 3 years now. I'd get tired after 100 feet and just have felt generally weak when walking...
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I know this may seem silly and stupid to some, but I'm just curious if anyone else sometimes has trouble differentiating between feeling weak (which we all do) and being fatigued/tired.
My neu...
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Okay, I need help. I am freakin out. I just found out a week ago that I am pregnant. We were not intending for this to happen. I am terified, as my only child has congenital muscular dystrophy an...
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My wife and I REALLY want to go on our first cruise ever, before it's too late. I'll have to get a scooter or chair first. That's already in the works. We already don't camp anymore and haven't be...
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I find that I'm dealing with myriad emotions concerning my LGMD. The biggest ones being: Frustration, Fear, Depression, Embarrassment, Anger, etc.
Of all of these I think frustration is the m...
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I got a letter from MDA yesterday. It told about the upcoming vote in the house and senate to continue the MD-CARE Act of 2001. The bill will steer federal money to MDA research. MDA asked me to c...
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Hi guys , anyone know of any trials that are upcoming for this year , there doesn't seem to be anything in the pipelines that I'm aware of LGMD 2A , seems to have gone a bit quiet , I'm wondering ...
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A lot of people on this site are still working despite the fact that they've been diagnosed with MD. I worked full time since I was 17. But in 2005 I finally had to leave my job as an engineer at ...
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I have had these knots that come and go they are sore and the weather seems to affect them. I don't know what they are yet I have been going to doctors for 3 years now and still know nothing. An...
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Hi, I'm new to the board but old to the disease, FSH MD, that is. I'm 54 and still kickin'. Wanted to ask if any of you take BP med. I take COZAAR - I read that there is a side effect that has ...
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I saw an add in the MD magazine and thought it might be helpful. Anybody?
...
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Hello all. I am new to the boards and have finally decided to post. My daughter, Sydney, was diagnosed with congenital MD, merosin positive, subtype unknown back in 2004 via muscle biopsy. She ...
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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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