Originally Posted by Gabe

Hi Erin -
In April of 2004 I was having a great deal of difficulty swallowing - had Optic Neuritis in my right eye the previous October - Went to my primary doctor and was referred for MRI's to rule out MS - MRIs were normal so she did more tests. I was diagnosed by an antibody test by my primary doctor in June of 2004 she sent me to a neurologist who confirmed the diagnosis with another series of antibody tests but then sent me to a specialist at the University of MN because he was concerned that i might have ALS or MS rather than Myasthenia Gravis. He put me on Prednisone and Mestinon in July of 2004 and I saw the neurologist at the U in October of 2004. He did some more blood work and a Single Fiber EMG but I was on Prednisone and Mestinon at the time so all of the tests were normal. He then admitted me and took me off the meds for three days and repeated the tests - the SFEMG was wacky but not conclusive.

My regular neurologist said that the Prednisone would have still been in my system (was on 60mg a day at the time) so he wasn't happy with the U of M findings. He referred me to Mayo Clinic - took a long time to get in but was finally officially diagnosed by the neurologist at Mayo Clinic in January of 2006. I had a thymectomy in the Spring of 2006. Was on Imuran and Prednisone but apparently had an inability to metabolize it and my liver functions were off the charts - switched to CellCept a year ago in November and take 3000mg a day - I am off the Prednisone because I developed Osteoporosis and my blood sugars and cholesterol were elevated. I started getting IVIG in the Spring of 2006 and have been receiving it every 2-4 weeks for the most part. My veins couldn't take it - IVIG is very hard on your veins.

The port is about the size of a quarter. they made a slit about 1 inch long to put it in. Compared to my thymectomy scar it is nothing - in fact the scar from my chest tube from the thymectomy is bigger.
Gabe