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I’m sorry this is happening to you. I thought I’d share my experience with FGFR3 if it helps.
What makes you categorize your symptoms as autoimmune, and is it primarily small fiber neuropathy?
I have small fiber neuropathy and also am positive for the FGFR3 autoantibody. The thing is, there’s not much research on this autoantibody. You may have come across the studies already on your own, but they’re very small and some associate it with small fiber neuropathy. There have been some small trials for IVIG and some show people improved while others show people didn’t improve.
Other treatments for FGFR3+ small fiber neuropathy are plasmapherisis and steroids.
But because there’s such little evidence, it’s been my experience that very few neurologists are either (a) familiar with the FGFR3 autoantibody or (b) feel comfortable with the treatment strategies I mentioned above. The original neurologist who diagnosed me did research in this area, but she left my state before we were able to start treatment.
Is your neurologist through Washington University? That’s the only lab that I thought when does the FGFR3 testing, so I wondered if there was a neurologist there who’s familiar with it?
It unfortunately doesn’t surprise me that your neurologist didn’t want to treat the underlying cause (if you’re attributing it to the FGFR3) because of what I mentioned above. There’s just very little research to show that anything other than conventional treatment would be effective unless there’s more to go on than the FGFR3. If it’s medications you’re more interested in, providers will attempt to manage the symptoms with gabapentin, Lyrica, or Cymbalta. There are neurologists who are more familiar with FGFR3 but I’ve gone through about 10 neurologists and only found 3 people who were aware of it. All but the original neurologist felt confident treating it the way I described. I’ve been been to two Mayo Clinic campuses neither team knew about it at all.
There’s also a Peripheral Neuropathy discussion board on Connect that you might want to check out. I’ve seen a few posts from others with the FGFR3 autoantibody.)
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I have been on Gabapentin for going onto 5 years, when Peripheral Neuropathy first manifested itself, my PCP referred me to a Rheumatologist, who did about 30 different blood tests, nothing stood out. Maybe this is just very coincidental, but I had been on Cymbalta for about 12 years for pain management from a real bad auto accident, when I weaned myself off of it, the Peripheral Neuropathy started very slowly though mainly just cold toes and fingertips. Now it is numb and painful too. Between PCP and Neurologist, the Gabapentin dose went from 300 mg once daily to 600 mg three times daily. At one point in time, the Neurologist up it to 800 mg three times daily, but I could not tolerate that dose, went back to 600 mg 3x. Neurologist also added 50 mg Nortriptyline. Concurrently, with the neuropathy, I began having a dull burning pain in my right ear, after about 2 months of wasted time with an ENT, the ENT recommended I see a Neurologist, I ended up seeing a second Neurologist at the Neuromuscular Department at BJC/Wash U. She got off track with thinking I had early onset Parkinsons, which I did not. I got a referral from her to see a "Neurotologist," which supposedly is a Neurotologist that specializes in ENT, but he was just an ENT. I saw him on June 5, he thought it was a compressed nerve and wanted to confer with the Neurologist and Orthopedic Dr (he is the one that referred me to the Neuromuscular Dept. Asked me to give him a week, been 3 weeks and the ENT did not respond to a follow-up message 5 days ago. If you are wondering why all the discussion about the dull burning ear paid? The Wash U Neurologist is the one that said it is probably due Small Fiber Neuropathy, however, the dull burning ear pain is positional, gets really bad when sitting too long. The auto immune belief is due to the constant chills and just never feeling well. With FGFR3 Antibody, co-existing autoimmune diseases can be observed. Also, Trigeminal Neuralgia too. Did the IVIG infusions help you?