Hi Scrubbs,

I will try and answer your questions. I had the high dose cytoxan (reboot) in November of 2010. Now, almost 2 years later I continue to do well. I've not had any significant flares at all.

It was just about 2 years ago this month that I actively began thinking about doing the reboot. I was in bad shape. I was emaciated from the dysphagia, and many days I had to work all day to get a couple of glasses of water into me. I was unable to converse more than a couple of sentences before becoming unintelligable. Double vision was almost constant and extremely severe, and I was only comfortable driving to and from school to get my daughter, to the grocery, etc (with one eye patched--so scary at times!). I was in bed for the night by 6:30 in the evening (with 1 or 2 naps during the day). I was deeply depressed and on the verge of either giving up or actively attempting to end my life. It wasn't hard for my neuro to agree to the reboot when I told her about that!

The whole reboot process itself was brutal, and I had to be "healthy enough" to do it. Lucky for me, I was pretty darn healthy other than the MG. With your age, Scrubbs, I don't know how many doctors would be willing to do a full on reboot. I've heard whisperings of 65 being the cut off age for most procedures like this.

My neuro did offer me, as an alternative, the low dose, once a month infusion. I decided, for me, I should "go big or go home!" That decision came in large part, to the fact that my neuro is over 2 hours from me, and that would be difficult to coordinate month after month. With the reboot I had a month of frequent trips to the onco at the same center and then I was done. My dh took "family leave" to care for me. If low dose had been available locally, I *might* have tried that.

Hope this helps. From your description, it does sound like you could benefit from something other than what you are using now. Your functional quality of life does not sound too fun, and I'm so sorry about that. As you know, being "stable" and "having a satisfying life" are two completely different things!

Let me know if you need more info! Good luck on your new journey!