Hello-first post small fiber neuropathy-Glennt and Mrs D?
 

Hello All,
Thank you for this forum-I have learned so much from all the knowledgable members.
I'm a 57 year old healthy female and who was diagnosed with small fiber neuropathy via punch skin biopsy November 2012. I have a 17 year history of progressive pain in hands and feet. Two years ago I went to a rheumatologist who was the first person who labeled it as neuropathy. This year the pain increased especially during hurricane sandy when my feet became so numb it was difficult to walk. Thanks to this forum I visited Dr.Latov in an attempt to find a cause. Like many others after extensive testing my SFN was deemed idiopathic.
The only abnormally high lab value was Vitamin B6 which came in at 30.8 (normal high is 21.7). I was not taking any supplements or vitamins. Latov was dismissive of this. B12 was normal at 572.
Past medical history:
Irritable Bowel-recently better by following a low fodmap diet
16 year history of using birth control pills ( stopped 10 years ago)
The biggest trigger is the weather-during the fall my symptoms are the worst. I would welcome some feedback/impressions/advice from the group especially Glennt and Mrs. D. I have recently started on the recommended supplements of Vit B12, Rlipoic acid, acetyl l carnitine and benfotiamine.
By the way, although mostly normal my a1c and cholesterol have been creeping up. I have never had a glucose tolerance test but think I it would probably be abnormal. Thanks so much.

Welcome to NeuroTalk:

What about medications? hobbies? exposure to chemicals in the garden or home?

While Dr. Latov's tests are pretty complete, there are not 100%
of tests available for everything. So some autoimmune peptide may be a culprit but there may not be a test for it yet.

Chemicals in the environment, can be problematic...even dry cleaning chemical residues. Chlorine in pools.

Then there is hereditary types, which have separate DNA tests not routinely done. Did you have any of these?

Were you tested for methylation failure?

Mechanical issues with the feet, or spine?

The first issues to look at are magnesium, B12 and Vit D. Your reading of B12 is on the low side. So taking some methylcobalamin for 3 months may show some improvement if that is your problem. Magnesium can be applied topically or used orally-- not the oxide form however since it is not absorbed.
You can try soaking in epsom salts and see if that helps at all.
For many here this helps and suggests further oral use or topical lotion.

If you take statins for cholesterol, you'll have to think about that...as they can cause PN. There are other drugs that can cause PN as well.

Mrs. D-thank you for your quick response.
I am not on any medication.
I can't think of any hobbies that would have contributed to this. Yes, I swam in chlorinated pools during the summer for most of my life and regularly wear clothes that have been dry cleaned.
I don't believe I had any DNA testing or methylation failure testing-I will ask for these.
No spinal issues I know of. Alas, I do have bilateral bunions and have arthritis in my feet-different type of pain.
I do have low Vitamin D and take 4000 iu of D3 daily. Will be retested in a couple of weeks.
I will try the magnesium lotion or supplements to see if that helps.
Again-thanks for your response-I am blown away by your dedication to this forum and your knowledge.
I would like to stop the progression and minimize the pain (if possible)in an attempt to delay needing medication to deal with this.

I agree, your B12 levels are low especially for someone with PN.

I guess for me, the never ending cause of PN is no longer as important as trying to treat it because ultimately, it doesn't seem to matter what causes it all we can do is treat it. I don't mean not to look, but after so many tests and kicking rocks, the treatment is the same.

The nutrition expert I spoke with last week said most thyroid issues are from too much estrogen from consuming contaminated animal product injected with antibiotics and hormones. So I said how do we fix too much estrogen. His answer...stop eating those animals, only organic and to sweat it out is the only way to release excess estrogen.

Bottom line, even if that is the answer, it doesn't help me cuz I can't afford to eat that way, and it hurts my pn to get hot. lol

This disease is like a merry go round, the more you look, the more you find, the less it helps, lol.

Just some humor/levity.

So onward we go trying to heal. Good luck!!

Thank you Stacy,
Yes, I'm sorta resigned to the fact that I won"t know what is causing my neuropathy in the short run. I am concentrating on staying healthy and using as many of the interventions to see if they will halt progression and keep the pain at bay.
All the best to you as well!

Most USAers eat much more meat than we need. you can cut back, even if you can't sub the better.

*ack* say it isn't so!!!!! Cut back on meat? lol

I have always enjoyed my meat, especially since going low carb. I know all the pro's and cons of meat, but you can't take away bread, sugar, AND meat. lol

heck no! just DECREASING, lol.