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Hi, received Dx of Cramp Fasciculation syndrome, or Neuromyotonia about 4 years ago. It's so rare than hardly any doctors know much about it, if they have even heard of it at all. Usually they haven't. The bad news is there isn't much info on it and no big research. No one famous has it I guess. Good news, they don't think it will kill me. Just make me miserable.

The little that is known about Cramp Fasciculation Syndrome is summarised here Cramp-fasciculation syndrome | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program.