Reply To: An update from emitch74…
emitch, my experience was similar to yours in some important respects. I, too, was first diagnosed with GBS, but this was changed to CIDP. This is not unusual for cases with initial presentation similar to GBS. I, too, was moved to rehab while my condition was still deteriorating, which caused some problems with therapists who did not understand the disease and its stages. Fortunately, for me, this stage was short-lived. I don’t think anyone hated me (not many, anyway). I had my daughter as my advocate, armed with a copy of Parry and Steinberg, and an excellent neurologist who set the therapists on the right path. Then the situation was resolved when I went back in the acute hospital with pneumonia and completely crashed, making the futility of rehab apparent to all. Then came plasma exchange, and the beginning of recovery. Once I could feel my motor function returning, I started giving rehab therapy everything I could muster, and recovery of upper body strength was rapid. Recovery of lower limbs was much slower, yet fast enough to satisfy everyone. Just last week, after about a year and a half of recovery, I started going out without my cane. (I haven’t been using it indoors for months.)
It is true that medical people of all sorts love to see people recover, especially from serious illnesses.
Your experience is also consistent with my view that, at least for CIDP patients who crash, the more plasma exchange treatments, the better (I had nine).