My husband was diagnosed with benign fasiculation then later Isaac's Syndrome. So far he has tried Klonopin, Quinine, Tegretol, Dilantin, etc. None seem to help except the Klonopin which takes the edge off of the nervousness and tingling he has. It does not help the muscle jerks at all. He has had this for 11 years and is in otherwise good health. These muscle jerks started in the legs and have now progressed to all parts of the body. There is no wasting of the muscles. Is there any help out there other than what we've found. We are desperate for an answer. After a while it tends to weigh on you physically and especially emotionally. Thanks for any help.
The standard treatment of Isaac's syndrome is phenytoin and carbamazepine and
valproate are used as a second line agents, it would appear however that your
husband has tried almost the entire range of pharmacological therapies
There have been reports of good success in some cases with the use of
plasmapheresis, followed by steroids.
This therapy has not been subjected to a large clinical scale trial but
some anecdotsal reports have been very positive, I suggest that you
mention this option to your neurologist.
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