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Anyone with emery dreifuss muscular dystrophy??

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Old 08-20-2013, 01:48 PM   #1
Join Date: Aug 2013
Location: The South
Posts: 1
thisguy23 HB User
Anyone with emery dreifuss muscular dystrophy??

Hey everybody, what's up?

I haven't seen many topics about this, and I read through a few pages, so sorry if I missed something.

Anyway, sparknotes version of my story. Never officially diagnosed with any form of MD. However, definitely have something. I've got the contractures in my elbows and can't bend my neck forward at all.

Pain in the butt but I got used to it. I don't remember when this started. My mother has it as well, and so does her mother. We all underwent a lot of testing when I was a small kid, going to a MD clinic in Richmond. So I guess there were always signs, but I didn't know much as a kid except that I was terrible at sports and doing push ups.

However, the tests were inconclusive in a diagnosis for whatever reason. I'm 23 now, about to turn 24 (I hope) and I started to get worried after noticing my hands, of all things, were looking funny. My fingers are all turned and I can't straighten them out. I'm guessing it's something similiar to what's up with my feet. Mainly that I can't put my heels down. Short tendons or something.

But after reading online I reckon that what I have is close to emery dreifuss muscular dystrophy. Does anyone here have that? What can I do?

I hate going to doctors, but will be soon just for a general checkup after I scared myself online. Haha. I went to a doctor for something different a couple years ago and it was hard to answer why I'm so skinny without really knowing.

Lots of times I don't even notice I have this. I hate to see pictures of myself though, and the fact that I have yet to convince anyone to go on a date with me. Haha...

I work a job that requires me to be outside and on my feet pretty much eight hours a day. Climb a looot of stairs too. Which I hate. Every time I go up a big flight I have to stop and take a break which is embarrasing ...

But I'm just looking for someone with something similar. Some days I feel really mad that I have this. I just want to be a normal guy ya know? Get married and have kids, that kinda thing. But it could definitely be worse, so I'm thankful for that. I ride my bike almost every day, and play some basketball occassionaly. Even though I can not run more than a few feet.

My biggest fear is that this will get worse and I won't be able to do these things. My grandmother is in a wheelchair now, but she was walking until very recently when she fell. So I dunno if that's related. Lots of people in my family have had heart attacks and strokes too.

Ramble over...

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Old 08-20-2013, 11:21 PM   #2
Join Date: May 2010
Location: S.A.
Posts: 145
mandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB Usermandy37 HB User
Re: Anyone with emery dreifuss muscular dystrophy??


Nice to see that sense of humour

I have limb-girdle MD and I do not have any of the symptoms you mention

You might just find someone on the site responding to you re this - hope so

PS Cannot find someone to date me either : )

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