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Undetermined Auto Immune

Autoimmune Diseases | Last Active: 9 hours ago | Replies (22)

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@dstone501957

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?

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Replies to "I have been on Gabapentin for going onto 5 years, when Peripheral Neuropathy first manifested itself,..."

Hmm. That is quite a confusing blend. I hope that you hear from the ENT soon. The ear pain does sound a bit more like a compressed nerve than small fiber nerve pain, since you mentioned it’s positional.

I didn’t actually have an opportunity to try IVIG because my neurologist proposed the care plan right before the pandemic and at that point monthly infusions in a hospital or at home seemed unwise, and then she ended up leaving the medical center. That was in 2021 and only last year I found a neurologist who could understand the plan she left, but new research has since emerged (namely, the more recent study that showed IVIG didn’t result in a statistically significant change in symptoms for people with presumed FGFR3 small fiber neuropathy), and I also have POTS and an autoimmune arthritis, so he wanted to pursue treatment for POTS first.

He helped me get in with the POTS Clinic at Johns Hopkins; the clinical director is both neuromuscular medicine and physical medicine and rehab. And he said IVIG might help me, but “It’s not without its risks,” so he wants to exhaust all other conservative measures first. It’s been a long road.

There’s at least one person on Connect I exchanged posts with who did have a positive response to IVIG for this.

I hope you’re able to have answers and a path forward soon.