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Is Neuropathy curable or just treatable? Does anyone know?
Neuropathy | Last Active: Aug 11, 2023 | Replies (69)Comment receiving replies
EMO-Two neurologists, one at Brown Neurology in RI, and a second opinion consultant at Mass. General surmised after numerous tests, that my poly neuropathy was probably an autoimmune reaction, either to spinal fusion surgery, anaesthesia, medication or infection unrelated to surgery. Both recommended iVIG infusions, along with continuing Aquatherapy and clinical PT at URI, our nearby state university.
I have noticed improvement in motion and strength in my legs, and glutes, also in my upper body and core, which helps me walk with a smoother gate on my walker, able to weight-bear more on my legs. Pain has calmed down over time, too.
So, with that experience I would encourage you to search out a neurologist who understands the connection between autoimmune causes of neuropathy and will order iVIG infusions to tamp down inflammation in your nerves. And continue with PT that will work on the brain, balance, muscle, nerve connections. Do what you can, and make sure you have a neurologist or two in your corner. We are there in the meantime.
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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!