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Is Neuropathy curable or just treatable? Does anyone know?
Neuropathy | Last Active: Aug 11, 2023 | Replies (69)Comment receiving replies
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.
Replies to "I feel your 'pain'! I too have elevated FGFR3 Antibodiss along with elevated CSF protein. My..."
Ohhh no. I'm so sorry Medicare reversed its approval after you knew the relief...
That's one thing I didn't mention in my schpeel about IVIG, lest I fall into another rabbit hole. Both the original neurologist who raised IVIG as a potential option and the neurologist who trained with her that I may be able to work with here, made it sound like it is exceedingly difficult to get IVIG approved. They basically said it always gets denied in situations like this (where I guess it's not "life threatening"?) to force an appeal, so even if they felt it was worth trying and medically necessary, they couldn't say how long it might take to get an approval or if it would even be approved at all--or if it worked, if I'd be able to continue it.
This is my funny/not-funny anecdote about gabapentin: My senior dog before the end of his life was prescribed gabapentin for pain, which is supposed to be more effective in dogs than people (?) At least I think that's what the vet said. Therefore, we were less concerned about giving it to him. After just one dose and within a two hours, he couldn't walk! He was so drowsy, I had to take his dog bed to the kitchen, roll him onto it (he was a black lab/pit mix, 80 pounds) and slide him across the tile floor back to our living room. We did not continue the medication for him.
Now, I know gabapentin benefits many, many people with chronic pain. But after that experience, added onto my medication sensitivity experiences, I become very suspicious when a physician tells me a common medication is "generally well-tolerated," at least for those in the classes that alter communication with the brain and nervous system.
If it is antibody mediated, why the docs not recommending immunosuppressive drugs like tacrolimus, cyclosporin, or cellcept?
Also, I would like to know if anybody had PLASMAPHERESIS done to remove the offending antibody. Thank you.
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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.