Is Neuropathy curable or just treatable? Does anyone know?

I was diagnosed with idiopathic peripheral Neuropathy small sensory fiber. I have Multiple auto immune diseases and Mayo in Rochester decided most likely from Sjogrens Syndrome. Yeah I had a cause but there is still no cure and same treatment except for most part. Still it was good to finally get an answer.

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.

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!

I agree. “Idiopathic” is one of my least favorite words related to chronic pain. In my head it’s translated to: “We don’t feel it’s worth the effort to try to figure it out.” And then it’s typically followed by the provider asking if I’ve ever tried Lyrica or gabapentin.

My small fiber neuropathy (initially classified as idiopathic) is suspected to be of autoimmune origin because I have an autoimmune arthritis and I first started having symptoms 2 weeks after a very bad cold virus. For unknown reasons (like with covid) viral infections are suspected to flip a switch in the immune system.

I’ve also tested positive for something called the FGFR3 autoantibody. Research is being done to see if something like IVIG could treat or even “cure” it. But it’s nearly impossible to find a neurologist willing to look into this or attempt it. The neurologist who diagnosed me moved out of state.

So, at least in my situation there’s a potential biological explanation. I also have something called motor autonomic pain, which happens when the parts of the brain that manage the sensory and motor connections don’t communicate well with my peripheral nerves, causing pain. It’s thought that we can retrain them brain/CNS to communicate better. I am doing/have done PT geared toward this specific issue and my symptoms have improved.

I kind of see that as a potential cure…if there was a way to re-train the brain/nervous system to stop delivering the pain response. That’s kind of my pipe dream…

I feel your 'pain'! I too have elevated FGFR3 Antibodiss along with elevated CSF protein. My dx is Antibody mediated sensorimotor axonal neuropathy. My neurologist made clear that my IVIG infusions were meant to slow the progression of the disease....and they did, until Medicare reversed its approval in April. A dramatic decline ensued. Like you, exercise has helped reduce cramping/pain and I've heard the Gabapentin song. Ugg...it really messes with ones cognition. I had to stop. It seems like all the docs can do is identify our conditions thus justifying for insurance our seeing PT's, Pain Mgt Docs and others in the field. So now it comes down to a mental game. Finding ways to live with our rebellious bodies.

I'm glad to hear IVIG worked well for you. From my understanding, IVIG should tame down the overactive immune system for a while allowing the body to rejuvenate. I'm also interested in pursuing this treatment if my doctor approves as my neuropathy is likely autoimmune mediated as well. Do you know approximately how much IVIG cost per treatment without medicare approval? I've heard $3500. Is this about right? Thanks for your help.

Yep, thats the explanation my doc gave me too. As for the non-insurance cost, I don't know. I never asked although that number sounds about right. Are you considering paying out of pocket? By my calculations that would come up to $60k or more per year. Yikes!! I'd rather spend those saved bucks on experiences...like travel especially since the IVIG is not curative. Keep me posted on what you chose to do.

I feel your 'pain'! I too have elevated FGFR3 Antibodiss along with elevated CSF protein. My dx is Antibody mediated sensorimotor axonal neuropathy. My neurologist made clear that my IVIG infusions were meant to slow the progression of the disease....and they did, until Medicare reversed its approval in April. A dramatic decline ensued. Like you, exercise has helped reduce cramping/pain and I've heard the Gabapentin song. Ugg...it really messes with ones cognition. I had to stop. It seems like all the docs can do is identify our conditions thus justifying for insurance our seeing PT's, Pain Mgt Docs and others in the field. So now it comes down to a mental game. Finding ways to live with our rebellious bodies.

I feel your 'pain'! I too have elevated FGFR3 Antibodiss along with elevated CSF protein. My dx is Antibody mediated sensorimotor axonal neuropathy. My neurologist made clear that my IVIG infusions were meant to slow the progression of the disease....and they did, until Medicare reversed its approval in April. A dramatic decline ensued. Like you, exercise has helped reduce cramping/pain and I've heard the Gabapentin song. Ugg...it really messes with ones cognition. I had to stop. It seems like all the docs can do is identify our conditions thus justifying for insurance our seeing PT's, Pain Mgt Docs and others in the field. So now it comes down to a mental game. Finding ways to live with our rebellious bodies.