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wjones159 (@wjones159)

Small Fiber Neuropathy

Neuropathy | Last Active: Sep 25, 2021 | Replies (82)

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@mdemo

Just joined this group. I was diagnosed with sfpn about 1.5 years ago. It has been a struggle. This is the first forum i joined to maybe share info/ get info on this disease. I was confirmed via punch biopsy in 3 locations. I saw a couple of top NYC neurologists who did every test and they all came back negative for the cause. I guess i have been put in the idopathic column. That did not sit well with me. I was recommended a real smart imunnologist/ integrative DR that took 30 vials of blood to dig deeper. I was found that my b levels were off despite taking b complex for a while. I was also found to have a lot of inflammation in my body as well, lower d&k vitamins and the biggest surprise was high mercury level via urine test. I immediately had large metal filling removed and started chelation therapy. The dr put me on metanx ( my buddy wasnt absorbing b vitmains) and about 5 more supplements. Vitamin D and K, R- Lipopic acid, Anti inflammatory (curcimin/boswanna/black pepper), high quality EPA and DHA oil, and coq10. Well i started to feel better after a little while. I even came off the lyrica, which wasnt helping. Pain was a 9 and after a while i was at a 2 and sometimes forgetting about my discomfort for longer stretches of time. I had a good 6 months like that with a small flare up recently but even that only gets to a 5 from a 9. Long story short is keep pressing on with your search. I prob will never know the cause, but i did find stuff that was out of whack and prob contributed to this condition. If you find a good DR and get things inline , your can prob get better and start healing the nerves. I still feel some pain at times but i can deal with this if it doesnt get worse. I go back in a couple weeks to recheck mercury level and som other things. Good luck and i hope i can get some more good info off this site and learn some more.

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Replies to "Just joined this group. I was diagnosed with sfpn about 1.5 years ago. It has been..."

That is great info. I am going to the Cleveland Clinic in two weeks to have them look at my SFN. I will convey this info. I also have high inflammation, extremely low vitamin D levels, but my B6 was high. I read that B6 may be high because the body doesn't absorb the B6 due to a gene deformity. Also, what is chelation therapy? Thanks for posting this – it gives me hope.

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