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Is Neuropathy curable or just treatable? Does anyone know?
Neuropathy | Last Active: Aug 11, 2023 | Replies (69)Comment receiving replies
Thank you so much for sharing your experience! I have looked all over (and tried posting here) to find anyone who had experience with the FGFR3 positive autoantibody small fiber neuropathy, but so far no dice. I've only seen sporadic and older posts about it on Connect.
(I know you didn't specifically mention the FGFR3 autoantibody, but IVIG has been used to treat it, but research is very slim.) I am hoping to get connected with a neurologist through Mayo to get another opinion, but I'm not sure if my treating physician will be able to help me secure an appointment, and honestly I'm not feeling all that optimistic--and if I do, I'm not sure how they'd feel about it. I may have a lead on a neurologist at home who trained with my original neurologist (so many neurologists), who might support trying IVIG.
Do you mind sharing what your initial infusion schedule was like and if you had side effects? Also, do you expect to do IVIG forever, or is the course just for a few months? I was told some people do just 3 months; others need it regularly if it's effective. Either way, so glad to hear of someone who had a positive response combining PT with IVIG. Thank you for the reply!
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I have been taking IVIG infusions, with a break of 5 months due to another unrelated medical issue, since February, 2022. It is for one week a month, 3 hours, 5 business days. My infusions are give at a branch of Rhode Island Hospital, where Brown Neurology and my neurologist are. The infusions are based on your weight, so let them know if you cannot get up on their scale. I weigh myself at home.
Once ready for the infusion, I first get Tylenol and a Benadryl, Benadryl either as an IV or orally. The infusions are given in private cubicles there, so I can read or watch TV, or sleep.
I have not had headaches, S some report, and have suffered no other side effects.
My neurologist seems to be of the mind that if it seems to be helping, she will continue to order it.
She is also at Brown Medical School as a professor, so the research part of IVIG is interesting to her.
I am also on a Zoom meeting once a month with resources from The Foundation for Peripheral Neuropathy. I can let you know when we have our next Zoom meeting. There is also the Western Neuropathy Association which has Zoom support groups. Cornell Weill Medical Center in New York has a research center for neuropathy.
I hope this helps.