Quote:
Originally Posted by Topsie
Like your wife, I too have myoclonus. Once I turned 31 I got essential Palatal Myoclonus. When I turned 35 I also got Spinal Myoclonus. They have no idea how or why I have this. I am now 36 with no sign of either disappearing. It is an aweful and very lonely condition to have. Only 1 in 2 million have Palatal Myoclonus and only 1 in 3 million have Spinal Myoclonus so it makes this burden even heavier for me. No meds have worked, but caused Nuerontin me to gain 30 lbs. The only thing that has worked like a God- sent are 2 things: Biofeedback and PT. The Physical Thereapist does cranical sayprial (spelling is wrong- sounds like that) work to slow my central nervous system. The root cause of myoclonus is the involuntary over firing of the neurons in your brain. Have your wife ask her doctor about these two things. Best wishes. Topsie
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Your situation is truly burdensome. I was wondering though, if your case of Palatal Myoclonus occurs only in 1 in 2 million and Spinal Myoclonus only occurs in 1 in 3 million, then how did you get the diagnosis right in the first place?
Because I made suggestions in various health forums where a patient can key in the symptoms, the internet will come up with the possible diagnoses, print them out and present it to your doctor who will then give the final diagnosis.
I would like to make use of the power of the internet to limit the diagnoses, reduce the trial and error stage, and reduce the frustration of both doctor and patient.
Right now, I feel I'm not getting the right diagnosis as my symptoms don't match the descriptions of myoclonus, specifically Lance-Adam's Syndrome. The only drug to reduce my hand tremors was Piracetam, but my body has developed immunity from it.
Though the urgent problem I want resolved is my inadequate sleep. I feel though that if I'm prescribed the right muscle-disorder drug, its side effect will affect my sleep.
09-10-2008, 01:24 AM
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