Thanks! So, do you think diskitis could affect the ganglions in your back and cause widespread neuropathy? I have read about sjogren's syndrome, but I don't have that.

Radiculopathy (dysfunction of the spinal nerve roots) or even frank spinal cord compression can cause symptoms that can exactly mimic those of peripheral nerve dysfunction farther "down the line", which is why inquiry into neural symptoms is often so time-consuming, expensive, and process of elimination.

As Mrs. D point out, though, the Liza Jane spreadsheets are excellent for suggesting tests to comprehensively work up such symptoms, and are also good for tracking results over time. (Too often, doctors think in certain tracks and their test orders are spotty and incomplete.)

Well, I have had my spine checked out by a neurosurgeon and they saw no radiculapthy. I have had MRI's with and without contrast. I will look at the spreadsheet again. I just don't know what else it could be.

Have you had a skin punch biopsy to see if it's small fiber neuropathy? What about EMG and nerve conduction studies?

Yes, I have am EMG and nerve conduction study. They were normal. I have not had a skin biopsy. I am trying to get that accomplished. I have been reading how burning in your back in not normal for neuropathy. It scares the crap out of me!!!!! I want to see my kids grow up and be mobile!

I have been wondering if you have tried Lidoderm patches?

Applied to your back, where you know you have that problem, might be helpful for you.

I found for myself when I had terrible thigh pain..called Meralgia paresthetica, from my abdominal surgery, nothing helped it.
Then Lidoderms were approved here in US and I got my doctor to give me an RX for them. Two weeks of very day use (12 hrs on 12 hrs off) and these patches actually put me into a remission!
I guess the nerve was just firing because it couldn't turn itself off. (cutaneous lateral femoral nerve)
I found that applying them at the high point of the thigh where the nerve exists the abdomen was the best spot. I think Lidoderms work best where the "source" of the pain is and not where it is "felt".. which is typically a referral location and not the direct target.

So I think you should try this. They are expensive if insurance won't cover them, but really they were amazingly helpful for me.