Muscular Dystrophies Support Group

The muscular dystrophies are a group of genetic and hereditary muscle diseases; characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. In some forms of muscular dystrophy, cardiac and smooth muscles are affected. The muscular dystrophies are the most-known hereditary diseases... There is no known cure...

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Genetic & Metabolic
/ Muscular Dystrophies Support Group

Family gene for muscular dystrophy

Monnie45
Monnie45
Hi, I started seeing a rhumetalogist months ago for high CPK. My brother had the same problme. I have since had an MRI, muscle biopsy, EMG and various blood tests. I was referred to a doctor at George Washington University in DC and his suspicion is that I carry along with my brother a gene for a form of muscular dystrophy. He has ordered a blood test, though, to confirm it. Although he told me not to lose sleep over it, I am concerned. Anybody know what kind of muscular dystrophy he might be referring to. I do have some difficulty going up stairs but I do live on the bottom floor of a condo and don't do stairs much. I am having no pain. What am I "looking forward" to.
blujay1
blujay1
you may have myotonic muscular dystrophy. You symptoms should confirm it. I do not want to scare so don't freak about this list. Consequently myotonic dystrophy may present itself in what one expert has called a bewildering variety of ways. The list includes cardiac disease, cataracts, testicular atrophy, respiratory impairment and adverse reactions to anaesthesia, difficulty in swallowing (dysphagia) and other gastrointestinal tract involvement, mental disorders (including mental retardation), excessive output of insulin and abnormal carbohydrate metabolism, and excessive sleeping.
Right now i have it only ion my legs i cn not walk alot or stand very long. i have baldness,drooping eyelids, sexual problems,tired all teh time,stomach issues. and of course pain. do not freak i can still function. Also there is support here for u.
contact me anytime :)
deleted_user
deleted_user
Hi Monnie,
If you don't mind me asking how elevated are you CPK levels? Blujay, are you CPK levels elevated as well?
deleted_user
deleted_user
DO NOT PANIC....not sure what CPK is but I have LGMD (limb girdle muscular dystrophoy for 25 years I am now 55 and still ambilory but have trouble with stairs as well....Cannot leave a chair without my hands, definitely cannot run any longer, (although I still dream of playing baskeball) but What I can still do.....that is the question...and I can still do a lot...
zeedeks
zeedeks
I agree with Brad, do not panic until you are sure what you have, it might not be as bad as you think
Monnie45
Monnie45
I never responded to this post, at least don't think I have. I do have Myotonic Dystrophy 2 and am dealing with it. My CPK levels went up as high as the 900 but the last blood test I had it was in the 400, a bit better. I am having difficulty with peoples attitudes and don't like to keep making excuses when they ask why I am stuggling getting up stairs Or don't walk fast enough.

Marlene
zeedeks
zeedeks
Ja, I know, I just make up excuses of weak ankles form sport injuries etc.because as soon as they hera it is a 'disease' they treat you like a disabled person, which I hate. It is actually none of their business and I try to avoid stairs where possible.
So, I feel your pain.
Good luck