Sjogren's? I don't recall reading how that diagnosis was made---could you remind me, and anyone else who's lost track. I thought you had neuropathy associated with fibromyalgia.

My neuro and I had a talk a few weeks ago about Sjogren's--I've had a positive Schirmer's test. He basically thinks it's not a worthwhile diagnosis, and he's thought a lot about it. His take is that if you have neuropathy, and you have autoimmune issues in your eyes/mouth/joints, it's more helpful to think about them separately and get treated for them separately. Once you label them Sjogren's, he thinks, you're bound to just feel down. Interesting thought, as it's just a compilation diagnosis.

But I didn't realize you had sjogren's. Do you have the antibodies? Was it a positive parotid biopsy or eye/saliva test that made that diagnosis?

I was diagnosed with Sjogren's in 2003 via lip biopsy. I've had it for 10 years now. I also have fibromyalgia but consider it secondary.

The reason I'm concerned about proper diagnosis of Sjogren's is that I have extra-glandular activity, meaning it effects my internal organs in addition to nose and mouth. I have damage to my entire digestive system, lymph nodes and probably some vasculitis. I suspect autoimmune inflammation might be causing the neuropathy, although you are right, with neuropathy it's very difficult to tell what's causing what.

Fibromyalgia doesn't usually damage the organs directly, so it doesn't require as much monitoring (although it is a pretty crummy ailment in its own right). Also fibromyalgia as a solo ailment doesn't respond to immuno-modulators, anti-inflammatories or steroids, but Sjogren's does, so even though some of the symptoms of the two are the same, the treatments can differ. I find if I treat the Sjogren's, the fibromyalgia is much less bothersome.

I went to the primary care doc today, and she agreed to do the referral to the Mayo Clinic. She's going to try to get me in to both rheumatology and neurology. She did a brief neuro exam today and found some reduced sensation on my calves (different spots on different legs) that I didn't even know about as well as carpal tunnel type pain that I did know about.

I also found out this afternoon that my long term disability insurance company had called my primary care doc a few days ago and tried to bully her into stating that I could work and that I was suffering from nothing more than depression. The doctor told them that I could barely walk down a hallway, much less hold down a job and that I had primarily physical ailments. If nothing else, any documentation I get from the Mayo Clinic is going to put a dent in the LTD company's contention that I'm not really sick.

We'll see what happens. Oh, and I was clumsy at the doctor's office too.

fanfaire