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Myotonic Dystrophy
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Myotonic Dystrophy

Having recently been diagnosed with Myotonic dystrophy it has made me more aware of every slight dicomfort, irregularity in my body and worrying whether it has any direct relationship to the disease.  I am due to go to see an eye specialist as my neurologist believes there is a problem with my eyes.  Now I am worrying about this and would like to know two things really.
Firstly what are the likely things that could be wrong with my eyes? and secondly I am a very keen soccer player i play two three times a week, am i likely to be affected by the disease with my playing, i.e will i not be able to play soon etc?
would appreciate any help as it can be quite confusing and daunting, i am only 23 and this has come as a massive blow to my self esteem and well being.

thanks for your time

Lawrence
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Avatar_n_tn
The diagnosis of myotonic dystrophy (MD) is a serious one, so make sure that the diagnosis is correct and that other family members are checked for the disease. An EMG and genetic testing can confirm whether or not you really have it. As for your questions:

1.Cataracts is what the doctor is looking for. It;s an abnormality of the lens in which there is abnormal clouding over the lens (like looking through a dirty windshield at night) well known to be associated with MD. Surgical options are available.
2. The weakness associated with MD usually progresses slowly over a 15-20 year period in the proximal arms and legs (shoulder, hip/girdle muscles). The main problem at first for many patients is myotonia which is manifest as difficulty letting go of things in your grip. But htis part shouldn't affect your soccer game (except perhaps when throwing the ball) so keep playing as long as you can.

Consider seeing a neuromuscular specialist and geneticist to confirm the disease and help you through this difficult time. Good luck.,
3 Comments
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Avatar_n_tn
Dear Lawrence,
What is myotonic dystophy, and what s/s did you have? Just wondering.
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Avatar_n_tn
myotonic dystrophy is basically a muscle deformity where your muscles lack a certain enzyme which inhibits movement of muscles.  In my case its clenching my fist and not being able to open it without extreme difficulty and discomfort, its also the same in my jaw, if i grit my teeth together then try and open my jaw normally there's like resistance making it difficult to open.  There are lots of symptoms asociated with this disease, fortunately i don't suffer with all of them.  You could check out the myotonic website, www.myotonicdystrophy.com or something like that.  It started when i was about 19 and found it hard to open my hands directly after closing them, after numerous tests and analysis i was referred to a neurologist who carried out extensive research and test on me and diagnosed me as a sufferer.
Its best to look at the website though as these are my words and how i understand it... its better coming from a professional!!

take care

Lawrence
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A related discussion, myotonic dystrophy was started.
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A related discussion, myotonic dystrophy was started.
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A related discussion, Good resource for information on myotonic dystrophy was started.
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