Wow! Thanks for your replies! This information is so fascinating that I'm glad I asked.

I've probably had neuropathy for 10 years now, but I've also had fibromyalgia the same length of time, so whenever I would complain to a doctor about numbness/tingling/weird sensations, it would be dismissed as my fibromyalgia without any investigation. It wasn't until 2004, when I had an episode of going completely numb from the elbows down and from the knees down that a neurologist took me seriously and did an EMG. It was positive, but the neurologist was reluctant to connect it to an autoimmune cause even though I had been diagnosed with Sjogren's the year before.

I believe the primary cause is the Sjogren's, with the fibromyalgia exaggerating the pain signals even more. And you're right about Sjogren's causing nerve pain throughout the body: there are times when I feel as though I've been hit by lightning, it's that sudden, and I involuntarily yell and freak out whomever might be nearby. The most common scenario, though, is a very ragged pain in my right big toe, like someone is trying to take the top off my toe with a can opener.

I am debating now whether I should ask my primary care doctor to refer me to the Mayo Clinic. I am pretty confident that all my diagnoses are correct, but the problem is, they were made in Denver, and I have moved to Sioux Falls since then. I've been to three rheumatologists here, and none of them had heard of my Denver doctors, and none them believed I had Sjogren's (they had never heard of sero-negative Sjogren's), and they all told me I couldn't possibly be disabled.

So I'm at a standstill as far as a rheumatologist closer than Denver that will treat me. I really don't want to do all those tests over again, but if I don't have ongoing supporting documentation from a specialist, I will lose my disability benefits. My medical insurance won't cover something like this either: how on earth does a person on disability pay for a trip to the Mayo Clinic?

I would go straight to a neurologist, but I think it would help if I already had a rheumatologist lined up for them to work with. That way I might avoid the "it's only fibromyalgia" runaround I get so frequently.

Any opinions?

fanfaire