Home but not good

May 2, 2008 at 4:46 pm

Well, we were so happy to have Carolyn home and thought she was on the road to recovery. That doesn’t seem to be the case. Out of the hospital she could move her arms but had no small motor skills. She came home on April 18 and in these two weeks (this week IVIG all week) she now doesn’t have use of her left arm and nothing else seems to have improved. She was able to get off the catheter after being home only a week but she now needs it once in a while. Today both her and my wife are crying because of the frustration of this disease and the fact that Carolyn still really can’t hold her children.

She has an appointment with a Dr. Behar on Veronica Avenue in North Brunswick, NJ who came well recommended but we don’t know his education about GBS/CDIP. As of now we’re just floundering not even knowing if it’s GBS or CDIP although we’re now thinking CIDP since it’s been almost 4 months since the onset and she’s still relatively paralyzed.

She is not on any steroids but was on them up until the hospital release. Could that be why we’re in this situation? Should we be asking for these from the new neurologist? The last time she showed remarkable improvement it was during pp. Should we be asking to get that done again? We feel we’re all drowning.