MYWILLOW

Did you get a diagnosis finally MyWillow? Did you say you had blood sugar issues? After reading your posts I thought maybe a diabetic or pre diabetic neurophy? I'm an EMT not a doctor but I've had muscle /nerve /breathing issues for some time and the Neuro I saw reckons it is neuritis not neuropathy. It keeps giving me blood clots! I hope you're feeling better. Cheers Jono from Oz

Hi MYWILLOW,

I was googling the term "my muscles feel arthritic" (where, incidentally, mine do too), and then found several of your posts which fairly well convinced me that you have neuromyotonia or "Isaacs Syndrome." I suggest that you google "wiki neuromyotonia" or "isaacs syndrome forum," where I can imagine you'll recognize a lot of the symptoms as your own.*

Neuromyotonia is something like one in*a million, and is generally regarded as further out there on the peripheral nerve hyperexcitability spectrum than "simple" BFS, CFS or BCFS. And it's rare such that most neurologists have never seen a case (which hardly excuses any from not taking your complaints seriously IMO).*

I'm just "passing through" and thought this message might help. Will check in again to see if you have questions. Wishing you well.*

David

Hope you find some answers and they are treatable. I was D X-ed with BFS too but you are right, sometimes there is more to it then that....