Rumbaugh

Well, Dr. Rumbaugh (Emory University) was very nice and very direct. I had actually forgotten that I had an appointment with him since I made it 4 months ago, but I went yesterday anyway. He said the answer was in my medical records: I have an atypical form of a myasthenic condition PLUS. Meaning, there isn't a name for what I have: it's an autoimmune disorder with myasthenic tendencies. He said the answer was in all the tests I've had run, but no one yet had just had the courage to tell me they didn't have a name for it.

He suggests starting a long-term regimen of Cellcept as a treatment...it takes 6-9 months to take effect, so I need to stay on a smaller dose of Prednisone for as least that long, but I can reduce my dosage drastically.

He was very optimistic about my being able to manage my condition and live a normal life. I'm investigating the possibility of a thymectomy right now...Dr. Russo (specialist at Shands University Hospital) said there were a few reported cases of people with symptoms similar to mine and in those few, rates of success following a thymectomy were high. So for now, I hang my hope on that.

I'm learning to manage okay and life is good. Life really is good. I'm planning to horse-back ride in Ireland next summer with my aunt...so I'll do whatever it takes to be in top form before then. :D