March 19, 2017 at 6:56 pm
Posted in CIDP forum as well.. but kinda quiet.
Hello all, just to introduce myself my name is Doug and I am recently diagnosed with the CIDP. My spinal tap did not show any elevated proteins, so the doctor initially put me on 60 mg of prednisone for 14 days now taper to 40 mg. The goal is to show efficacy and try to get IVIG approved. Had lots of nerve activity and aches in legs when starting the prednisone which after two weeks has subsided, have been exercising legs as I can still walk well. How does one know if the legs start getting better, I have had Bells Palsy before and the nerves coming back felt just like the nerves in the legs while under “attack” so to speak. I’ve noticed the last two days more activity with the nerves since I started coming down on the prednisone, but I’m not sure if some of the nerves could be waking back up “so to speak”, will any improvement in the legs also act/feel that way, or should there be no twitching or pulsing of nerves?
I already have vitiligo and hashimotos thyroiditis, and compound heterozygous… so it just gets though dealing with these autoimmune issues.. I am still fairly strong, but as legs got worse over the past year, I thought it might be PAD had that checked but blood flow was good. I kept having problems and rear end and thighs wasting and figured out to see neuro… wish it was sooner, but still walking at least.. just weak fatigued legs.
Any feedback would be great.
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