Hi there - Thanks for your message. I have had an extensive work up for Sjogren's. I first was diagnosed with it by a doc at Harvard Medical Center in 2002 based on signs and symptoms. I had failed the Schirmer's test, but all other tests were normal. Just this past summer, I went to the Sjogren's Syndrome Center at National Institutes of Health in Bethesda, MD. They did a lip biopsy, which showed inflammation, but not the exact markers for sjogren's as I understand it. They also did a saliva test (both provoked and unprovoked). I was able to make saliva when provoked. I also had an eye exam. I produced plenty of tears on the Schirmer's test so I didn't meet the eye criteria.

They have a strict criteria (I think it is called the American European Protocol??) for diagnosing Sjogren's and I did not meet the criteria. You are right that you can be seronegative and still meet the criteria. I am seronegative, but I also failed to meet the other criteria so they said that, for now, they cannot diagnose me with Sjogren's. They said that doesn't mean I won't meet the criteria later. I just don't now. They said there is a correlation between Sjogren's and Autonomic Nervous System dysfunction, but they just don't understand it completely yet.

I have not yet had a skin biopsy/muscle biopsy for the neuropathy, but I plan to pursue that next. I have found a neurologist willing to do it, but he wants to do some MRI scans first. I think he should just go straight to the skin biopsy. I don't think the MRIs are going to show anything. They didn't 13 years ago when I first had the neuro work up.

I'm curious. What type of doctor did your skin biopsy? Was it a surgeon or another specialty? As I understand it, they do a punch biopsy, but how deep is it? I want someone who is experienced in this to do it.

Also, I have read about some tests they do for autonomic nervous system, but I don't know all of them. Can you enlighten me on this? I don't know my way around this site very well yet so any help you can give is appreciated.

Thank you again for replying to my post.