Pain Anyone?
 

I continue to be under investigation for whatever ails me (coming up to 1 1/2 yrs now). Most recent consult suggested MG. All labs are negative. Symptoms are classic and are increasing. I am to start a trial of Mestinon this week. The greatest barrier to getting this diagnosis is that I have much discomfort. I have been told that pain is not really associated with MG. It is usually tolerable, but is intense (sometimes for days), after significant exertion or a lengthy road trip (which I have just returned from and am really suffering). I use Tylenol #2 for minimal relief and rarely so. Does anyone else experience pain? Thanx

Many people who post here have pain, though I never have. As for the diagnosis, have you had a single-fiber EMG? Many people who have negative labs are diagnosed with MG that way. Not all neurologists can do this test--it takes one who specializes in neuromuscular disorders.

I hope the Mestinon does wonders for you.

Abby

I have been diagnosed (finally) with a Congenital Myasthenic Syndrome and pain -- oh boy do I ever. I am on two pain meds for leg pain especially. Sometimes it still hurts, after a lot of movement, even on the meds.

So yeah -- I hear you.

Thanks for the input. I did have an EMG (single-fibre??) of my left arm but was told it was "iffy" and showed artifact due to my movement (I did not move). I have read many studies that state negative studies do not rule out MG 100% and a clinical picture is the best tool. I am hoping this to be true. A very frustrating process this is...