Here is my story: I started having symptoms about three years ago in the summer, I had weakness, fatigue and drooping eye lids and burning in my legs, from knees to hips. I ended up being diagnosed with meuralgia parasthetica. Which is a nerve compression that causes neuropathy in my legs. This was the only diagnosis but didn't really cure my symptoms. But, I did get better. However, I masked symptoms for a long time. I tried to tell my neuro that I was exercising etc. but having weakness etc. For awhile I had symptoms that I thought was heart failure, choking, shortness of breath. I didn't want that diagnosis so I didn't seek treatment, kind of fed up with no answers etc. I would have continued on with this but. . .
In December we went to Disney for 11 days. I had a scooter because I can't walk more than 50 feet without weakness. I would have my 8 year old drive in some of the lines and I would fall asleep. I would also fall into exhaustion and asleep minutes after returning to the room. I had to give up a lot of plans at night. When I returned I was purely exhausted and unable to function. I couldn't work, I ended up in the ER with ptosis. When I went to my neuro he said. . .hmmmmm, I wonder if you have myasthenia gravis. I am a registered nurse and never even considered or thought of that. For a long time I thought I had MS, ALS, Lupus etc, all ruled out. The diagnosis fits all of my symptoms. I am still very bad right now, we went to disney in December of 2010.

My neuro does know how bad I am right now and we are still increasing my Mestinon. He doesn't want to start me on anything else yet. I have an appt with a neuromuscular specialist in the first part of April and I really hope that I will get some better/more complete treatment.

Now, I'm pretty exhausted, long post.

Cassie