I live in outside of Richmond and there is only 1 neurology group in town. I have IVIG 0.6mg/kg every 3 weeks (last dose last Mon, so it should be in full effect--before I started the IVIG I couldn't walk and was on O2---I had a 5 day course and have been having it monthly (or less now) for the past 4 years...it has been the only thing that actually worked---but it seem that it is not enough anymore

I started a steroid taper (60mg x3d, 40 x3d...) yesterday and it helped my breathing...I was wheezing alot. Now I can at least walk to the kitchen without significant SOB.

My swallowing is worse today, but I scheduled to have a J-tube (into y small intestine so I won;' reflux) placed through my G-tube tomorrow, so after that I would be eating anymore (right now I'm using the G-tube, but do to reflux I can't put enough in so I supplement with mushy stuff like soft boiled eggs. Befroe the G-tube I lost 30 lbs also (in 4 weeks), although I don't need to see any of that weight back.

I have no idea what the neuro's down here are thinking...I went to me primary care yesterday for the breathing stuff and she was appalled at their lack of initiative, but there is not much she can do..except wait for my appoint next week.

Hopkins better come up with something or I may just go ballistic.

Are you feeling well today?