Healthy until 2004 when slight tingling appeared, without any known cause, in my toes. Four years later diagnosed with Peripheral Nerve Hyperexcitability PNH). It took longer to diagnose that it should have because neurologists were either ignorant of this rare disease
[More] of misunderstood the proper way to diagnose. Protocol calls for a special EMG that looks at post 5 frequency stimulation (5-10hz) of selected nerves. If the test is positive for then you should be screened for an autoimmune cause since some autoimmune cases have an underlying cancer connection. So, if EMG is positive, ask for the paraneoplastic antibody screen that looks for an antibody to a voltage gated potassium channel (VGKC). If you have it, you should then be screened for potential underlying tumors (by CT and then PET scan) before beginning any immune suppressive treatment. Some doctors will treat with anticonvulsants. Not a whole lot of data driven science behind treatment since this is so rare and poorly studied.
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