Sorry, my earlier reply was incomplete and sent errantly by hitting the enter key.

I ended up giving you a beginning of my history with SFN. Where I left off was recounting of my efforts to get off of Neurontin and Flexeril. The result was that the cold I felt in my feet from the beginning of my difficulties in 1999 began to move up my legs. In 1999, I started wearing socks to bed along with sweats and sleeping under 2 comforters and a blanket under flannel sheets even in summer. With a reduced intake of Neurontin and Flexeril, the cold feeling turned into a burning and pins and needles sensation at times. It soon spread to my arms and face even though my doctor told me my face should not be affected. At times, my ears and eyes also burn. My primary care insisted I get back on my regular dose of Neurontin but I was determined to not do that.

When I finally went to a neurologist he did some testing and found that my B6 level was 10 times the normal rate. He was convinced this was the cause of my PN. I told him that because I had been having IB symptoms that were getting worse I went to a gastroenterologist who scoped me and told me to not eat spicy foods. In frustration, I paid $3,000.00 to a Buckhead holistic practice. The doctor did not tell me she was not going to be at the results conference which was conducted by a nurse who, among other things, told me I did not have any B vitamins. Along with a prescription of Cipro for intestinal bacteria, an OTC recommendation for a parasite, she also recommended a compounded B vitamin which would have been quite expensive. Initially, I did the antibiotic and OTC rec for the parasite. I became very ill with diarrhea around the clock including throughout the night. I went back to the gastroenterologist who put me on Creon which I was on for over a year. Because I could not get in touch with him as promised I saw another gastroenterologist who said I should never have been on Creon. My diet since 1999, went from organic foods with mostly vegetables to vegan to giving up beans, tomatoes/nightshades as Gundry recommends. This helped by IB symptoms a lot but still have too many BMs. Currently I'm more Keto. Anyway, after my acute diarrhea ended I decided I needed to do something about my vitamin B deficit so I bought a multi-B complex and took it prior to seeing the neurologist. After his findings of elevated B6, I discontinued any supplement with B6 in it and I began limiting my intake of nuts and other B6 foods. The neurologist had conducted an exam for large fiber neuropathy on my first visit. He found, which I already knew, that I had carpet tunnel in both arms but no indication of large fiber neuropathy. He said they could biopsy for SFN but I asked if he doubted that I had it and whether the biopsy would be worth the discomfort. He said no. So I focused on reducing B6 in my diet. After about a 1.5 years, I saw him again. He did more testing and found my B6 was still elevated but not nearly as much. I told him I had taken a multivitamin with B6 in it before I saw him because my pain was worsening and I read that sometimes it's due to a deficit in B vitamins. I was convinced the neurologist thought my PN was due to me sabotaging my treatment by taking B6 even though I told him that I had the burning since 1999 which was probably masked by the 1600 mg of Neurontin and 10 mg of Flexeril I had been taking. I also mentioned that I had told the doctor at the holistic practice that I had cold feet and this was prior to me taking a multi-B complex supplement. Anyway, after 3.3 years, I returned to the neurologist thinking that if I got the biopsy, maybe this would make a difference in how I was treated. The 2 biopsies on my left leg resulted in the SFN diagnosis. It was only then that I googled SFN and found that it can have a 100 causes and that if the underlying condition is treated, the SFN in about 50% of the cases resolves.

At this point I decided to see a neurologist at a major hospital in Atlanta that advertised that they had a multi-disciplinary approach to treating PN. And it was after mention Dr. Perlmutter, a neurologist who often appears on PBS to the neurologist I saw that she said; "Why don't you just go home and die!" and why don't you just make an appointment with Dr. Google. Seriously, she seemed to take pleasure in telling me there was nothing that could be done. I asked about seeing a gastroenterologist or rheumatologist and she said "NO!".

So this is where I'm at. Still taking Neurontin nightly and Flexeril when I haven't slept for a few days. Now my mouth is extremely dry in the mornings and there is some numbness around my gums and front part of my tongue. My neck is now quite painful and I've had swollen glands for over 6 months. I've seen my new primary twice for the swollen glands and finally a referral was made for an ENT later this month.

I'll add this comment. One of the questions I wanted the neurologist to answer was whether root canals could cause my problems as I had 3 of them prior to the onset of my problems back in 1999, 2 of which were done by a quack regular dentists who said he just had training on this and could do it even though he did teeth adjacent to the one I complained about (later finding out that the tooth I complained about was infected but not operable on by an amateur because the roots were twisted). I recently found a dentist who has referred me to a specialist who does cone beam scanning. This dentist found 3 teeth that he suspects are necrotic because they did not respond to a cold test. Oh, if only a few tooth extractions would clear up my problems.