After a four month wait to get in, I finally had my appointment with the neuromuscular specialist this morning. He spent a full hour with me - going over my history, test results, and past/current symptoms, and doing yet another general neurological exam. (Yes, I can still touch my nose and walk on my heels and toes.)

After all was said and done, he indicated that the only neurological issues he found were a slight loss of touch and vibration sensation in the big toe on my right foot. He said this was not enough to support a clinical diagnosis of PN, or to justify the full series of tests that would be necessary to determine the cause of my symptoms.

Of course, I asked "then what is causing the burning/pain in my feet and tingling in my hands?"

To which he replied that there is obviously something making the nerves "angry". He couldn't determine what that was, but didn't feel the issue was neurological in origin. He did make note of my varicose vein disease, and suggested that could be causing circulation issues that could lead to irritation/damage to the nerves in my feet (of course, that doesn't explain the hands).

So, I guess the next stop is my vascular surgeon. I had the veins "fixed" in one leg several years ago. The other leg definitely needs some work, and first leg is getting worse again as well.

In the mean time - I'll continue the dietary changes and supplements that will hopefully make my nerves "less angry".

Are symptoms worse at night or at rest/lying sitting?

That is another hallmark of PN.

Hope you are better soon.

Actually, my symptoms (primarily burning feet, along with numbness in the toes) tend to get worse later in the day, and the more I walk, especially with shoes on. Once I get the shoes off and put my feet up - the pain subsides pretty quickly. (But the numbness remains.) I don't have any significant pain while sleeping.

This doesn't sound quite so like small fiber neuropathy but as others have said SNF would rarely show up in nerve conduction tests anyway. Bit baffled for you but could it be Erythromelagia as part of Raynaud's re vasospasms?

My feet were exactly the same as yours for quite a few years except for the numbness......but my feet burned every night and I just waited for 5 pm every work day so I could take my shoes off while driving home. Once they calmed down that evening I was good to go until the next morning.

Then Bam ! Chemo, rise in blood sugar and biopsy confirmed severe small fiber neuropathy.

I sure wish I had known about neuropathy back then so maybe I could have helped avoid what I'm going through now

Debi from Georgia

Do you mean you had a course of chemotherapy and this caused your burning feet? Bit confused here by the use of chemo - which I know can cause neuropathy for some

Nope

For a good 5 years prior to my cancer/chemo treatment my feet would hurt when I walked too much at work and then burn like they were on fire by the time I got off work. I was so busy I never gave it much thought.

I was already pre-diabetic going into chemo and we (me and my doctors) believe that I already had the SFN and the chemo just accelerated it and now I have no A or C fibers left in my feet. "Devoid" of A and C fibers is what the biopsy stated.

Debi from Georgia

I just don't get this at all, Ragtop. If you have "only" Small Fiber Neuropathy you won't have any outward have any outward detectable symptoms. Your motor nerves are fully functional, but your sensory nerves have their knickers in a twist. Only you can feel what your sensory nerves are doing.

http://www.hopkinsmedicine.org/neuro...europathy.html

For what it's worth, I saw a vascular specialist to make sure known circulation problems weren't causing my neuropathy, and was assured two different times that they don't cause the kind of symptoms I'm having.

From the Hopkins page, this is me: "A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic."

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