Debra,

I'm sorry you had to go through all that you did. I'm sure it was a very scary period.

I had sort of a mini crisis last November when my neuro put me in the hospital to give me a high dose of steroids by IV. When that didn't work, he ordered plasmapheresis (up to 5) and they were done every other day. I wasn't nearly as bad as you (wasn't in ICU but was having some breathing problems from time to time). I was scheduled to have my thymectomy surgery in about a month, but my neuro and surgeon moved up the surgery while I was in the hospital and after I had finished 4 of the plasmapheresis. They were of the thinking to do it now while I was somewhat better rather than sending me home and the possibility of me getting worse again before the surgery. When my neuro ordered the plasmapheresis, 2 house surgeons came up to my room to "get me ready." They ended up putting a catheter in my groin that had 2 tubes dangling from it. That wasn't pleasant. I learned later that this is not the usual way it's done. The actual treatments don't hurt, but I did find it was more of a mental thing. It was done in the dialysis unit and gave me a weird feeling knowing all my blood was leaving my body and being put back in with new plasma. I was a little tired after each treatment, but I had been in a hospital bed for over a week at that point, so was just weak overall.

It's now 5 months later and I'm doing well (knock on wood) and am just taking 30mg of Mestinon 3 times a day. Just ended a 5 month taper off Prednisone.

From reading everyone's story on NeuroTalk it seems neuros and medical institutions certainly approach each case differently.

I'm hoping each day finds you a little stronger.

Kathy