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Peripheral Neuropathy

Discussion in 'Peripheral Neuropathy' started by Nielk, Aug 14, 2012.

  1. Tammy

    Tammy Senior Member

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    Sally...........Could yu tell me the reason yu started taking Benfotiamine? Years ago, I had a lab test of all the B vitamins and it showed I was deficient in Vit. B1............all the others were OK. ​
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I take it and Alpha Lipoic Acid, etc to heal the nerves. It is good for glucose levels. Nerves are sensitive and need sugar to be level, not spiking or going low. I have Autonomic Neuropathy (Dysautonomia/POTS) My doctor has me taking many supplements, but those help heal nerves, along with others. Diet is the other half. I am improving and I am very happy!
  3. arx

    arx Senior Member

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    Hi Sallysblooms,

    I thought B6 toxicity is rare.How much of B6 (pyridoxine) is safe to take everyday, and how much of it causes toxicity?
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I just looked at my post. The sugar LEVEL must stay level. ha. Sounds like you need sugar for nerves...Ups and downs in glucose levels are bad for nerve health.

    B6 is needed but some people are very sensitive to it. The amount would be different for me and you I am sure, I am sensitive to it. If you ever get tingling in your feet and legs, just stop the B6 for a while. It went away when I did that. I am sure glad I figured it out. I was so worried. I get some in my multi and in several of my supplements.
  5. arx

    arx Senior Member

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    Well,tingling in my feet and more so in my spine and head is one of the symptoms of my b12 deficiency. They are mostly there all the time. I cannot really distinguish whether it is from the B6 or not. I just realized yesterday that the sugar level is very important. I've experienced both, hypokalemia and low blood sugar. I'm keeping these two in check. I take 40 mg of pyridoxine everyday. I think other people on Freddd's protocol or otherwise take around 100 mg??
    I left B6 for 3-4 days. Even though I could not figure out the effects from the lack of B6 as I take a lot of supplements and have a lot of brain fog,I felt a bit worse, so I started taking again. It's good that you have figured it out. I very rarely experience such stark differences by adding/quitting supplements.
  6. Timaca

    Timaca Senior Member

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    I also have PN. It was one of my presenting symptoms of my illness. So, I went to 5 neurologists. All my tests were normal and they were puzzled. They thought my neuropathy was not neurological in origin.

    Recently, my valtrex dose was increased from 500 mg bid to 500 mg tid. I got a HUGE flare in neuropathy symptoms. Everything felt worse and I got some new symptoms (the socks and gloves problem). Now it just seems to be socks....the gloves not so much. This scared me....I wondered what was going on.

    I realized that something similar had happened to me when I took IV vancomycin prophylactically during a knee surgery....I had a huge spike in symptoms. I am hoping that both cases are due to some kind of die-off of pathogen. I am going to see a neurologist again (first time in over 6 years) to get his opinion on what just happened to me.

    It was interesting for me to see this thread....truly I wonder if some of us are infected with pathogens that affect the nerves (like herpes viruses).

    To answer the B6 question....Dr. Latov recommends NO MORE than 50 mg a day in his book: Peripheral Neuropathy
    http://www.amazon.com/Peripheral-Ne...8&sr=8-1&keywords=peripheral neuropathy latov

    Dr. Latov specializes in PN. He is one of the doctors I saw 6 years ago, and I will be seeing him again in about 3 weeks: http://www.weillcornell.org/physician/normanlatov/index.html

    Best, Timaca
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Having doctors that understand what makes nerves healthy is very important.Diet, level blood sugar, Alpha Lipoic Acid, Benfotiamine, Glutathione, and other good antioxidents and supplements. Staying away from toxins including many meds is important.
  8. Nielk

    Nielk

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    I forgot about this thread that I started.
    I had mentioned that the Neurologist sent me for an MRI of the brain. The results showed a meningioma (benign tumor) that is pressing against my trigeminal nerve.
    The neurologist and nerosurgeon who I saw don't think that my peripheral neuropathy can be attributed to the meningioma. It seems that it was an incidental finding, although I do need to take care of it since if it grows any more it could cause major damage.
    taniaaust1 likes this.
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    ((Neilk,)) I hope you can get it taken care of. Sorry to hear that.
  10. Nielk

    Nielk

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    Thanks, Sally
    It's definitely not a diagnosis that is fun. I'm "lucky" in the fact that it is benign and I'm currently looking into radiation therapy in order to avoid risky brain surgery.
    taniaaust1 likes this.
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, it could be worse for sure, but still not what you want to hear. I sure hope the treatments will work for you! I had surgery to my head, middle ear, very serious. I hate thinking about it. It is wonderful to have great doctors that can help so much though!
  12. Timaca

    Timaca Senior Member

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    Nielk~ So sorry to hear about your newest finding. :hug: (That's the closest icon I could find for a hug.) I am glad you found it early though......

    Hugs again,
    Timaca
  13. Nielk

    Nielk

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    Thanks so much Timaca. It's nice to see that people care.:thumbsup:
  14. Vincent

    Vincent Senior Member

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    Sometimes I get this 'buzzing' feeling in my feet. I went to a neurologist about it and all they could offer me was the nerve conduction test. I told them no thanks and never went back.
  15. Nielk

    Nielk

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    Why did you not want to take that test?
    I had it done and it showed dysfunction.
  16. Vincent

    Vincent Senior Member

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    I don't want to be stuck with probes and have current sent down them. I don't have medicare co-insurance anymore, since it's so expensive. It's not a huge deal for me I'd rather just live with it.
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Just make sure you do things that help the nerves heal.
    Nielk likes this.
  18. Sea

    Sea Senior Member

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    Sorry to hear of your MRI result Neilk, but I'm so glad that it's been found early. Hoping for all the best for your treatment.
  19. Nielk

    Nielk

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    Thanks - Sea
  20. Rory_5

    Rory_5

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    My CFS was immediately preceded by a mild bout of Guillain Barre syndrome (autoimmune demyelenation of peripheral nerve endings). The GBS largely went away but since my CFS came into play I've had some muscle twitching, mainly on my left side (especially at night, confirmed by a sleep study).

    I'm on selegiline to help with the symptoms, but this drug is mainly used for Parkinson's, i.e. central and not peripheral. So, I don't know what I have--central or peripheral nerve problems.

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