Originally Posted by madisongrrl

David,

I can relate to some of your story. My SFN symptoms came on very fast when I turned 38; it's pretty much patchy all over my body. Looking back even a few years, I had many "mechanical" issues that were likely nerve related - especially that last year leading up to my acute phase.

Unlike you, I have extreme burning - face, head, arms, legs, back, butt etc. I have a vestibular disorder that came along with all of this. I think it has something to do with the nerve pain that broke out deep on the left side of my face - throat to eyeball. It's likely what neuros called Atypical Facial Pain. Fatigue, shooting pain, tremors, heart palpitations, tinnitus, hearing issues, disequilibrium, wet and hypersensitive skin, deep bone and joint pain, and spasms....you name it, I've experienced it.

I was eating a whole-foods Paleo style diet before this came on. I was also an elite cyclist (maybe not the healthiest thing, but I loved it) and had a really demanding career. Now my life is so different. I've adjusted, but I feel like I've lost my identity and it makes me sad sometimes. So I just try to take it one day at a time. My career has been scaled back and the only exercise I can do is pool aerobics with a bunch of women that are significantly older than myself.

It's great that you've been reading the paleomom's blog. She is a biomedical researcher and has really dug into the data with intestinal permeability and autoimmunity. I've been kind of doing a higher fat paleo diet, but I think I want to try a full on ketogenic diet for a few months. I bought a ketonix to help measure ketones. I also take a number of supplements and enjoying reading about supplement science. I used to both develop analytical methods and perform 3rd party lab testing for a wide variety of supplements and pharmaceuticals. I never knew that my background would ever come in handy for anything in my personal life.

Like you, I'm a researcher. It's both in my personality and is something I do quite a bit in my professional life. The top thing that has helped me so far is taking a drug called Low Dose Naltrexone. I've only been on it for 2 months and it has significantly reduced the burning in my hands and feet. The doctor who prescribed this drug is evaluating me for Lyme disease. If this turns up negative, then I don't know what the next step is. All my regular doctors don't really seem to care or want to help. They are perfectly fine giving me as much gabapentin as I want to take, then send me on my way out the door. This disease is so incredibly frustrating.

I'm both glad you found this message board and sorry that you had to join the SFN club.

Originally Posted by madisongrrl

Thanks David. I'm getting better ever single day. Baby steps, I guess.

Originally Posted by bluesfan

Hi DavidHC

Thanks for sharing your journey and the info you've researched.

I have PN (probably autoimmune SFN) but the neurologist says there's too many things going on health-wise to establish a definite diagnosis/cause. (Primary Addison's Disease (adrenal failure), Osteoarthritis, Sicca syndrome, TN + other stuff). Like you I've found lots of useful info here on NT.

If you haven't read the PN stickies here are links to a couple with lots of info and directions to other links & websites:

http://neurotalk.psychcentral.com/thread177.html (started by Liza Jane)

http://neurotalk.psychcentral.com/thread43699.html (started by Liza Jane)

If you go to page 2 of the second thread there is 3-part post(s) by a member named Wing42 that has information on diet & supplements to reduce PN.

All the best for your continued treatment. You've done exceptionally well to turn your lifestyle around - hope it brings you more improvements.

Originally Posted by glenntaj

--given the immune function of the gut, dysregulation there might lead to autoimmunities with neuropathy as a symptom.

And, alcohol has been implicated in many neuropathies both through direct action and through impacts on nutrition--a lot of heavy drinkers suffer from vitamin deficiencies that themselves may result in neuropathy

Since Liza Jane's testing sheets were brought up, what sort of serological testing have you had? There are tests for numerous autoantibodies, but given the less length dependent and rapid presentation you mention, the obvious investigatory roads include toxins, and gut autoimmunities such as Crohn's anc celiac.

Originally Posted by DavidHC

I do have IBS, so there might be something going on in the gut, likely so, made worse by the beer, the yeast and grain, and possibly some toxin or something that has caused infection and systematic inflammation.

Amyloidosis is also a possibility. I do have relatively low B12, but not deficient according to conventional standards. My D was quite low though. Anyway ideas and suggestions are certainly welcome, and thanks again.

Originally Posted by stillHoping

Have you tested for helicobacter pylori ?
Have you tried to reduce the salt intake ?

H pylori can reduce B12 and other nutrients absorption
Sodium increases the activity of H pylori and irritates the gut.

Originally Posted by DavidHC

Thanks, Stillhoping. No, I haven't tested for it but have suspected it in the past. I'll bring it up with my GP when I see her in the new few weeks. I consume lots of salt, good sea salt, and don't feel any worse, so I don't know. My GP did do a parasites and bacteria stool test a few months back, but that tests only for the most common things, and I don't believe HP can be tested that way, if I recall correctly.

Originally Posted by Patrick Winter

I have used the pro-biotic oral sprays. They have helped, i can't stand yogurt (if not sweetened) so its a better bet for me.

Originally Posted by DavidHC

I consume lots of salt, good sea salt, and don't feel any worse, so I don't know. My GP did do a parasites and bacteria stool test a few months back, but that tests only for the most common things, and I don't believe HP can be tested that way, if I recall correctly.