Reply To: Newly Diagnosed
RE: She told me if my symptoms progress or I don’t respond to IVIg then she’ll change the diagnosis to ALS.
Don’t think a diagnosis of ALS would be suggested in such an off-hand manner. She might suspect ALS, but once that diagnosis is given, it has to be 100% correct. ALS is fast progressing and you’ll know you have it if you have it. The weakness will be profound. I’ve had 5 neurologists… all visiting, as I live on an island in the middle of nowhere. ALS was explained to me in detail. I had all the symptoms and they got worse and worse the more I read about ALS on the internet.
CIDP- IvIg works for me to a degree. I am at present syncing the IgIv intervals to head off relapse. Foot drop will never recover. Right hand function will be limited forever. Breathing is problematic. I have recovered many of my sensory functions, bladder functions and my body-riveting fassticulations are subsiding.
good luck. Sstay off the ranting and rollicking medical forums dealing with neuropathy and ALS.