Wow
Ann

Tell me more. Where can I find out about this? Is it permanent. Forever in remission?

This sounds like the trials being done with high dose chemotherapy, or "reboots" that some have had. Basically, its a bone marrow.transplant like they do for people with leukemia. They discussed it at the MGFA national meeting in may. Apparently those who have had it have had good results, but some are seeing the mg come back years down the road.

Are you talking about HiCy treatments?

It makes sense in a way. As with the little knowledge I know, the bone marrow produces new and normal blood cells maybe it could help with our case. Looking forward for more information

Hmmmmmmmmmm Interesting. I never thought of bone marrow but many many years ago, the doctors thought I had leukemia and I had a bone marrow puncture test. I was close to the limit but not quite low enough to have leukemia. I have had difficulty walking/dragging my foot since I was a kid. My parents were told it was because I was born with Cerebal Palsy, a minor case, when i was born. Mestinon has definitely helped my walking unless i am super tired.

This is really a last ditch treatment and how long the good effects last is not known. We need our blood cells to carry oxygen and fight disease and cancer. This type of treatment involves wiping out everything in the bone marrow (obviously in the hospital and in isolation) and hoping that the treatment missed some pretty good stem cells which can recover or the use of donor stem cells. Some people have gone into remission and are not on any drugs. It is experimental, dangerous (potentially fatal), and the long term effects are unknown--but those who are free of MG are not complaining!. b.

Well, now that i think about it, MG is not really all that bad. Things could be worse. I think I will pass on that treatment.

Bambee wrote: "Well, now that i think about it, MG is not really all that bad. Things could be worse. I think I will pass on that treatment."

Bambee - I'm not sure where MG has taken you but I can tell you that in my personal experience MG is indeed "that bad." I've been one minute from death, code blue, and in a coma. With all due respect, It doesn't get too much worse that this.

Curt

Right now I only take Mestinon. I have had serious reactions from cortisone in the past when I was taking it for my Addison's Disease. I now take Licorice Root which is a natural cortisone instead of the chemical cortisone. I can tell the difference when I take the Licorice root and when I increase it with the Mestinon. I have been close to death and code blued many times with AD, Do not want to go there with MG. Side effects of pharmaceuticals scare me as I am allergic to most of them. So I am very careful in what I take.Fact of the matter is with all my other medical situations, doctors do not want to prescribe meds or do surgery on me.