I'm sorry , but I belong to quite a few CIDP groups an all I read about is all the IVIG treatments people are going through and their problems ( I have also had reactions to ivig ) and also the use of prednisone, I do not want to be caught up in the loop of "treatments " for years on end ! When are they going to figure this out and stop using good people like us as guinea pigs ?
I can no longer walk , am confined to a bed and a wheelchair, have painful neuropathy of the hand...s and feet , no use of my legs or right arm and hand , just went through a new set of MRI scans , new EMG testing , that left me quite bruised , I might add !
The only ones I see coming out on all this are the Dr's , hospitals, and big pharmaceutical companies, with all the money they are charging for all the
"treatments " they provided to their guinea pigs.
I am not as bad off as some of you out there , I was diagnosed only three years ago , I keep telling everybody that something was wrong ,NO ONE WOULD LISTEN. I have been enrolled in physical therapy 5 times to no avail , I use to be hard working middle class , I have been forced to disability , food assistance programs, and the like.
I am just getting tired of it and I am pretty sure many of you are too