For me it started by loosing a bunch of weight , than I had trouble going up and downstairs at work than painful neuropathy in hands , couldn't take it any more , had to quit work , it became harder and harder to walk , had to get a walker , went to hospital many times, no ideas what was wrong , had gallbladder surgery, had a stroke during the operation, went through PT got worse, could not stand or walk, seen neurologist,i asked neurologist if could be GBS did some test and ...spinal tap , came up with CIDP diagnosis, have had IVIG , am on prednisone, seems to be ongoing with many issues and setbacks , trying to keep this short , after 53 years of normal life , I am trying to adjust to and cope with this. HOW DID IT START FOR YOU ? WHAT DO YOU DO TO ADJUST AND COPE WITH YOU SITUATION? am now on insulin because of the prednisone raises my blood sugar, tired of getting poked !
only have had 1 1/2 rounds of IVIG , first five treatments went well , had some results also, than a month later started another set of rounds , bad luck there , had a UTI , got sepsis, was unconscious for five days in the hospital, kidney stone End of IVIG treatments, lost all that I had gained.
Neurologist thinks he was over aggressive with the treatments, thus causing the kidney problem. He now wants me to do plasmapheresis ,something I am not sure of, need permacath installed , afraid of that , possible infection , risk of another stroke ? Years of treatments ? If I recall from health class , do not antibodies continue to reproduce themselves? Thus the more you remove the more they are produced?
Neurologist also wanted to stop prednisone and put me on a transplant rejection drug , which has a possible side effect of causing cancer !
I have been through enough medical problems the way it is, every time I go to the hospital something bad happen to me
All the while they blamed it on me being type two diabetic, than it was cuz of the stroke , I kept insisting there was something else wrong ,NO ONE WOULD LISTEN TO ME, they all had their protocols to follow