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isaacs' syndrome(neuromyotonia)

I have had Isaacs sydrome for over 10 years now. It is continuous muscle movement, even during sleep and under anesthesia.  I take a lot of pain pills because of it.  Are there any genetic studies being done for this?. there are more people that have it that have not been diagnosed. Is there any stem cell hope?   I also have been diagnosed with Ehlers Danlos syndrome (Type 3) loose joints.  Could there be a connection to Isaacs and is there any new information on this that can help?  Sorry to have so many questions but I would appreciate your time  thank y ou.
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All very familiar. You are not alone. I've had this problem for over 11 years, and it affects all parts of my life. Twitching in my eyes makes reading hard, and twitching in my forearms/hands making typing, writing, or even eating tricky at times.

Despite years of testing, including four MRIs, EMG, EEG, blood, etc., I still have no definitive diagnosis, though a peripheral hyperexcitability syndrome (neuromyotonia, benign fasciculation syndrome, cramp fasciculation syndrome) is under consideration. But my healthcare provider lacks specialists for these, so I'm stuck at the moment.

Neurontin did nothing for me. Neither did the standard tricyclic antidepressants used for various pain disorders. Anticonvulsant meds help to some degree, as do lifestyle changes. Good luck.
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I've had muscle twitching for more than 2 years with joint pain, not much muscle cramping, mornings suck.  My biggest concern are the tongue fasiculations. I have a hard time speaking sometimes, a coworker thought I had been drinking. Just saw a Neurologist who's preliminary diagnosis is Isaac's syndrome. I'm in the middle of many tests; blood,urine,MRI. He gave me Neurontin which is not helping, only making me dizzy and dopey. Anyone having the tongue fasiculations and difficulty speaking? Also, I'm having difficulty typing. Sometimes my fingers start twitching and I'll hit a key multiple times. Please tell me some else has these issues.
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I have had Neuromyotonia for the last 40 years and I live a pain free life without any symptoms of Neuromyotonia.  When I was diagnosed I went through horrible tests at the age of 7 years.  After two years of testing they came up that I had a rare disease (Neuromyotonia).  The Doctor, at that time, perscribed to me 200 mg of Dilantin (phenytoin sodium) to take each night.  I have been able to live a regular life with no pain or muscle stiffness since then.  The medications for this disease are Ani-Convulsants which is what Dilatin is.  Ask your doctors to try 200 to 300 mg of Dilatin per evening for Neuromyotonia.

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Thank you for your help...
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Avatar universal

Greetings from Sydney.
Was diagnosed with Isaacs Syndrome 2 years ago this month.
I am certain there are many people with Isaacs that are undiagnosed and sufffering,
The main medications are Anti Convulsants

I can direct you to  group with a great deal of information. You find us by doing a Google
Isaac CFS World Chat Board please join us there.

Sydney Australia
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