I had symptoms for probably five years. At first there were mild enough to ignore. After surgery 1 1/2 yr ago, the MG came on so strong and never went away I had already been visiting specialist for a year, so it took 2 years to get diagnosed. And I only got my diagnosis because this forum pointed me to a neuro optomologist and then a neuromuscular specialist, otherwise, I would still be going around in circles.

I am sero negative - ACH and musk. I was diagnosed by a single fiber EMG. MGers are misdiagnosed and treated so badly because the disease is so rare only about 20 per 100,000. That means most doctors - GPs and neuros have never seen it. If you go to them with all these seemingly unrelated symptoms they think you are a hypochondriac or have mental issues. I think this is especiailly true because this and other autoimmune diseases are 4 times more likely in women. I have heard so many times that my symptoms were hormonal or related to menopause or perhaps I need an antidepressant. Unless you go to a neuromuscular specialist at a big teaching hospital that sees MG all the time, this is how you get treated.

kathie