Hi,

I know some are following my story, and I promised to give updates. Here's the latest:

Two years ago today I entered the bone marrow transplant unit for 4 rounds of high dose cytoxan, aka immune system reboot or revimmune. Five days later I went home as sick as I've ever felt, with an immune system that was dying....as planned. A week later I began growing a new immune system from the embryonic stem cells that were spared, deep in my bone marrow. The hopes were that these new cells would grow up not remembering that I have MG.

Today, things seem to have gone as planned, more or less. While my immune system didn't forget I have MG completely, it has agreed to cooperate with the meds I take, which it had never done in the past. I live life basically free of the severe symptoms that were slowly killing me (malnutrition and aspiration were real threats 24/7 and double vision was disorienting and life-limiting). I've had a few blips where I've needed to up my pred, but never more than 10 mg a day. I still take Cellcept and IVIG, but it actually WORKS.

Will this be the way I'll always be? One can hope, but the truth is, no one knows. My big goal is to see my daughter through the rest of her high school at my current level of function. She is a sophomore. Anything more than that is "gravy" and if the worst happens and things go really bad again, I would ask for the treatment again (but there are no guarantees that I would qualify for it again.)

My neuro says I remain the only person from her office who has done this treatment. Yes, it's radical, but so was the MG and so is the desire to finish raising my daughter and be the best I can be. I give thanks every single day that it was available to me and that I have had these last 2 years to really LIVE once again.

Thanks for reading. Feel free to ask any questions.