Please try to see a neurologist who specializes in neuromuscular diseases. If you have ptosis, see if you can find a neuro-ophthalmologist. You should have your blood tested at least for AChR, MuSK, and LEMS antibodies. If you test negative for all three, you should have a single fiber EMG. From what I've read here over the last two years, the "pattern of weakness" in MG is very highly variable. Some people call MG "the snowflake disease" because it is so different from patient to patient.

Abby

I have seen 6 neuros--the 2nd to last one saying I have a rare neuromuscular disease that defies diagnosis. I have had 2 EMGS, 3SFEMGs, MRIS ,tensilon test all the blood tests ,a muscle biopsy to rule out myopathy,a test for Pompe Disease and am waiting for a test result for Myotonic Dystrophy.

My optometrist wrote a letter to the neuro saying he had observed ptosis on my right eyelid ( he had to hole my lid open) and I spent 10 days in hospital rehab to strengthen my muscles but I ended up with very very shaky legs for 3 days. my breating muscles are affected and my pulmonologist said it is indicative of a neuro-muscular disease.

Did you see a neuromuscular specialist that has a lot of experience with MG? Please see the MG of Australia link. They have an MG clinic in Sydney. If you do not feel your treatment is effective, I would try the MG clinic.
http://www.myasthenia.org.au/html/news.asp.

Unfortunately, MG is so rare that unless you go to a neuromuscular specialist that sees it all the time, patients often go undiagnosed or misdiagnosed.

I hope you have find your answers,
kathie

Yes a couple of them were neuro-muscular specialists. If it is fibro it doesn't explain the ptosis ,the difficulty swallowing when I am tired, and the difficulty in not being able to walk more that 50 metres with leg weakness and breathlessness. My oxygen rates decrease significantly after 2 mins.
I have day and night sweats and have 2 nodules that are monitored every 6 months as I have had breast cancer twice. I aalso have orthostatic hypotension.