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.