Hello @sparkysparks, Welcome to Mayo Clinic Connect. There is some evidence that vitamin b6 toxicity can cause neuropathy since the body handles it different than the other b vitamins. You might want to join in the following discussions to see if some of the posts might answer your questions.

- Benign Cramp Fasciculation Syndrome: https://connect.mayoclinic.org/discussion/benign-cramp-fasciculation-syndrome/
- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

I'm assuming you stopped taking supplement with b vitamins. Have you had labs done to check the levels of b6 in your blood?

@sparkysparks I thought the same thing as John, B6. My wife, who has PN, has always taken b vitamins religiously, but about 2 months ago she finally quit as every b complex pill she took had some B6 in it. Her PN seemed to flare a lot when she took them and now she believes that has calmed down, no more flares from the B's.

I must say you sure had me doing a lot of internet searching for all the stuff you mention, much of which were new words to me. So it sounds like the heavy metals in your system have caused the neuropathy and possibly all of the muscle twitch/pain issues? Do you think the chelation therapy dealt with the metals effectively? Are there side effects to the chelation drugs themselves that you might be suffering from? A cursory look at an article about them makes it sound like you can get really messed up with improper use of them or administering the wrong ones. Did they question your reaction as to whether it was from the B vitamins or the chelating drugs?

I hope you find someone here in the forum who can give you their firsthand experiences with BFS/CFS. It's always a bummer to have a condition that is so rare as you have a hard time finding help/support from others with your illness. One thing I am learning more and more is how many different things can cause neuropathy. I am beginning to appreciate just how lucky I have been to never get it myself.

I wish you well. Best, Hank

@sparkysparks Hi there, I read all you wrote, and my heart goes out to you. I don't even know what to say, as you have so much going on. I think I would just be repeating what Hank said to you, but he can say it so much better than I could ever say it. I just want you to know, that I am here, feeling your anguish. My best, and all the prayers I can muster. Lori Renee

Dear sparkysparks, wow, I am stunned reading your post and what you've gone through and are going through. My heart is heavy; I can't stand what you've suffered and are suffereing!!!!!!!!!!!! I recently began eating salmon and tilapia. First it was mostly tilapia but now mostly salmon, fresh caught wild Alaskan King. Three times a week I've eaten fish. May I ask what fish you were eating and how many times per week? I always weigh mine and know it's 4 ounces. Since my already severe osteoporosis has worsened significantly (daily steroids but before daily mega doses), I've added more vitamin D3 to my diet than is in my multi-vit/mineral and my bone strength medication. How much D were you taking? I can't believe the chelation therapy caused you so much grief! I am so very sorry to hear this! I too have a ton of diseases and full blown SFPN from head to toe w/ organ dysfunction as well. Paresthesias, you name it. Raynaud's disease, oh my fingers hurt something awful! I have to wear exam gloves (give me more dexterity but keep fingers a little warmer than not) but still keep them in a rolled up heating pad every opportunity I have. I have no idea if recovery happens for anyone but I know God can heal when and if it's His will and that either way, He has a purpose in all things. I stand on this biblical truth since knowing Him so intimately and trusting Him in all my circumstances. I will uphold you in prayer and ask that you not only get relief but healing and ZERO pain! Warmest wishes, Sunnyflower

I have had what I would call flare ups body wide twitching on and off for 17 years. During these flare ups I get achy and burning in the bottom of my feet. I am currently in a 9 month flare up. Had all the Nero and blood tests and nothing ever came up except PN in my feet which so far is idiopathic