Hi Emo, my fellow FGFR3-er, makes me feel better that I am not alone suffering from this neuropathy thing.
IVIG - I had two rounds, multiple sessions in each round. First one was Gamunex-C, after multiple infusions, I got the Egyptian plagues reaction, I was visiting at the same time the cardiologist, the pulmonologist, the dermatologist and of course the neurologist. I was unable to walk a flight of stairs. To remedy rash, I was prescribed Prednisone, I would rather suffer from neuropathy, then take steroids again. Second one was Hizentra, no effect. The thought was, since Gamunex-C perhaps caused the plagues, I am allergic to this particular brand.
Plasmapherisis - done that, no effect.
I would have one neurologist in network of my insurance plan and one renowned outside and have the therapy by driven by the latter.
What works for me to dull he pain is minimal dosage of Gabapentin (I tried that for a week) and acupuncture (the magnets are the best)
One of the famed neuropathy specialists I visited told me, you keep teasing the neuropathy with all of these IVIGs and Plasmapherisis and you'll really mess yourself up ... but then again, he was not the one who prescribed the FGFR3 test.
My current in network neurologist (the one who prescribed the FGFR3 test and is quitting) gave me last week the walk on toes, walk on heels, prick and tickle test and concluded - observe the symptoms, take Gabapentin for flare ups and that's what I am going to do.
The symptoms feel and intensity fluctuate they are worse and they are better, but the overall tendency is a progressive decline.