Neuromuscular Doctors

[jupiterjane]

Why is it so hard to find Neuromuscular doctors? I have been diagnosed with Cramp Fasciculation Syndrome and for a year I was treated by  a Neuromuscular Specialist in St. Louis, a 4 hour drive one way. After a year of working with the Specialist, making the rounds of tests, medications, biopsy, IVIG treatments, cramping diaphragm, all to no avail. The doctor finally told me there was nothing more he could do for me and recommended I see a pain specialist. At the present time no one is treating or documenting this rare disease and I cannot find another movement specialist who knows anything about this disease.  My symptoms are getting worse and it is becoming more and more difficult to walk. I am in considerable pain from the constant cramping and it is difficult to sleep. I can no longer work and am receiving disability. I would like to find a doctor who might have a fresh outlook on this crappy disease.
jupiterjane

[jupiterjane]

Hi,
The neuromuscular doctor I saw was Matthew Harmes. He seems to be a very competent doctor, although he looks to be about 12, and he is kind of sensitive about it. He knew immediately at my first visit what I had and he worked very hard to help but in the end all he could do was send me to a pain management specialist.
My cramping and spasm started in my feet and legs about 2 weeks after having thyroid surgery. It has since progress all over my body. I have severe cramping all over my body and it gets worse if I do any kind of exercise. Even just walking to the mailbox, standing too long while cooking dinner, taking a shower, going grocery shopping can bring about severe cramping,(like a Charley horse in your calve) in my chest, back, arms, legs, stomach etc.
There are times when I am very depressed and anxious. I feel as though I will never find any relief.
I hope you find the help you need in St. Louis. Please keep me informed. i would love to hear how your visit goes and what your diagnosis might be.
Jupiterjane

[veggiemama]

I'm interested in learning more about your symptoms.  I have yet to be diagnosed with anything but the words Cramp Fasciculation Syndrome seem to describe what is happening in my arm,  I have constant fasciculations in my forearm and hand and occasional cramping in those same areas.  I have been to a couple of neurologists & was recently referred to the Neuromuscular Clinic at Barnes Hospital in St. Louis.  I am curious about who you have been to in St. Louis since I live nearby.  I hope to hear back from you as it seems we may suffer from the same condition....and from lack of information on it, it seems we're the only two!