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Myotonic Dystrophy Questions And Medicines


retiredat44
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at my latest Neurologist appontment, the doctor agreed to do further testing..

he said there is a blood test for the Myotonic Dystrophy, but that he needs to have the test specially ordered...

Also my records who I have Myoclonic seizures, or at least the doctor sees some proof.. those are the hard jerking moves my limbs do where they can just throw themselves out without warning..

For my appeals I have documents and submitting more for peripheral neropathy..

Just wondering if anyone else takes the drug Clonazepam (I have been given a prescription for it).

Thanx..

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I don't have results back from my Dystrophy DNA test.. but I can defintiely say I have been suffering greatly with all my limbs aching like I had ran a marathon and lifting weights.. and I really do very little around the house... my muschles contunally ache, I spend lots of time needing lots of rest and sleep. and when I can't sleep I double up on Clonazepam. And, as usual, I take my morphine several times a day...

Walking around the block kills me... it really wipes me out..

I really thought my doctor would have contacted me with results by now... I am not sure what to think, but it's hard to believe that only intestinal disease and pancreas disease can make my whole body so painful, weak, and sickly...

I had my DRO appeal hearing December 8, 2010. But, I don't expect anything for a couple more months, if I am that lucky..

Edited by retiredat44
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I was just diagnosed with myotonia congenita. I know it is has been a while since you posted but in case you ever get back on the boards you know you're not alone with this.

I had symptoms of it in the Army, was even "treated" for the symptoms so the S.O. and I sent in a claim. We are born with MC so there is no denying we had it in service. I guess the question is can we prove we had the symptoms?

I wish you well and good luck!

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