i would like to hear from anyone who has neuromytonia (Isaacs syndrome)?

Question:

I would also be interested in hearing what medication you have been given and if anyone has had a heomoglobin transfusion

Answers:
There is no cure for neuromyotonia. The long-term prognosis for individuals with the disorder is uncertain. Anticonvulsants, including phenytoin and carbamazepine, usually provide significant relief from the stiffness, muscle spasms, and pain associated with neuromyotonia. Plasma exchange may provide short-term relief for patients with some forms of the acquired disorder.
Please see the webpage for more details on Neuromyotonia (Isaacs' syndrome)

there is no cure for this condition

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i would like to hear from anyone who has neuromytonia (Isaacs syndrome)?

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