Annie..today was a better day. I’ve had a PFTbstudy on Monday and it did show diaphragm and abdominal muscle weakness with no lung disease. The Pulmonary Tech said my results were not too bad for early MG. I was using a cane and collapsed in the hallway on my way out of the study room because of leg weakness. It was performed at a University hospital. The most they did was get me into a wheelchair so that my husband could get me into a car to bring home! Honestly, there are no good hospitals where I live.

My problem is that both my original Neuro Opthamologist and now my new Neuromuscular specialist have doubts whether I truly have MG. They have both documented this in their clinical notes. The reason....only my SFEMG was positive. Repeated Acetylcholine Receptor antibody tests and Musk antibody tests were negative. My EMG was also normal. At each office visit, my Neuromuscular exams are not bad enough for them to make the diagnosis. Nonetheless, they started me on Mestinon, progressed to Prednisone and Cellcept and are now trying to get insurance approval for IVIG. in the meantime, I deteriorate. That’s why I’m seeking another opinion.

Tomorrow is my big day seeing Dr. Kaminski. Have you heard of him? I’ve researched him and it appears he’s an MG expert. I need someone with experience who can confidently diagnose and treat me.