Hi i am new to all this, this is the first forum i have been on so please be gentle with me!!!!!!!!!
I have a daughter who has just turned 6 who has merosin negative cmd. She is such a doll, wou...
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Now don't get excited! The results have not been published yet for the Wyeth MYO-029 Clinical Trials. But Myostatin did recently make the news and an article appeared which you can view from MDA's...
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mnb, I just read your post about coenzyme q-10. You mentioned 3 weeks ago you were "talking wheelchair with your wife" and now have a lot more energy -- was it really that dramatic?
The...
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Let me start by saying, I'm 17 years old.
I haven't been diagnosed yet, but my mom has always watched me and told me that I do have MD (CMT Specifically) She noticed my high-arched feet, the w...
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Okay -- here's an idea of how the chair has changed my life (Mark -- this is a lot for you )
We got up Saturday morning and my husband took some stuff to our church to donate for a Community...
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I promised to post after we got the enclosed trailer for the powerchair. If you remember, we decided that to haul the chair, we were more comfortable getting an enclosed trailer to protect the ch...
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hi everyone iam new to this site and i have this thing and i dont know what it is...i get this tightness in my arm and leg. it makes me weird. it makes my hands curl up and my toes curl. it also a...
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Hi Guys,
It has been a while since I posted anything here. I originally joined a few months ago after a traumatizing visit with a neurologist. In the mean time I have had an EMG and a muscle...
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I understand that no one here can make a diagnosis but I need a place to start and if anyone has any advise I would be very grateful. I have a 6 year old son whom I suspect has a form of MD. As an...
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I have LMG and was diag at about 13. I'm 54 now and have been very lucky. 3 kids and 5 grand kids all healthy. My wife of 30 years couldn't deal with my health issues so I am now divorced.
...
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Hello to all,
I am new to this board. I was diagnosed with Myotonic MD almost 2 years ago. I was having symptoms for a few years before that. The doctors could not understand what was wrong with...
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I got my power wheelchair last week. It's exciting to have it and imagine the freedom it's going to give me. It's also very depressing to realize my situation has gotten bad enough to warrant a ...
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Does MD affect the jaw?
My jaw has tilted, so my face is isometric.
...
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Hello everyone,
Has anyone heard any updates (or have first hand information) on the clinical trials Wyeth performed last year for MYO-029 (myostatin blocker)?
I was hoping that they would...
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Sorry this is long...........but really need help or ideas.
Hope someone can come up with ideas, not even looking for diagnosis any more just hints on what I can take.
10 years ago I had upper arm...
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Mark --
In a previous thread, you mentioned that you purchased an aluminum director's chair and that you just love it. I am interested but have a question for you.
Do you think it would s...
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[url]http://www.sciam.com/article.cfm?chanID=sa003&articleID=E3DA1 666-E7F2-99DF-3D596D3DE6D0976A&ref=rss[/url]
...
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Hey, just wanted to know how people get through the day because these days i am extremely tired all day and maybe have the odd hour im ok but i just cant be bothered with anything, i think i live ...
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My sons girlfriend is pregnant and she is the carrier her bother has a severe form of Duchene MD they have all tests done but we a very confused does this mean the baby will have DMD or are the ch...
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Does anyone else here experience muscle aches sometimes with their MD? I'm beginning to wonder if there is something else going on rather than this being a part of MD. I was just curious if anyo...
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Hi all,
I am new to this message board. I have BMD and have had a genetic test done which confirmed a deletion mutation of the dystrophin gene. I read the MYO-029 trial info. Hopefull...
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My husband has dysfarin muscular dystrophy and driving with foot pedals has recently become a real problem. I'm researching hand controls but don't know which are best. Any one have any experien...
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"Respect others' privacy when they are offline regardless why they are away from the boards."
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Because most people here, rightfully so, try desperately to stay positive, I'm warning you up front that this is NOT a positive vent. So if anybody says to themselves "I don't want this lady...
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hi
i live in the Uk and want to chat to people with my kind of MD, i dont know anyone in the UK with it!! well not in my area anyway.
would be great if i could chat to someone
thanks
...
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