Sarcoidosis causes the same kind of results on lip biopsy that you get as 'consistent with Sjogren's'. It's my thought, that if you can get serum correlation, you are on a better track to diagnosis. Many of the treatment for autoimmune disease are worse than the disease.

My doc recently told me I was too sick to have Sjogren's, and that IVIG would have helped by now.....which, was, my impression as well....sigh.

I strongly encourage you to keep pursuing diagnosis, because without a solid diagnosis, you can't treat. Your train may stop and you may get off at a few wrong stops, but, whatever you do, get back on the train!

I have exhuasted most options, it's possibly Sarc....(not all the pieces fit) or some hereditary or 'familial' dysautonomia, which has yet to be isolated on the genome, and unfortunately it doesn't seem like any one is researching it.

I just had blood drawn to check for HSAN III, which is THE Familial Dysautonomia, but, I am not confident that my heritage or ancestry is typical of this disease. Again....sigh. I am the closest symptom-wise to Familial Dysautonomia....but I have an elevated ANA. I miss the mark on all the other HSANs, so they didn't test for those. I don't like the idea of hereditary, however, it looks like they are treating HSAN III with oral Kinetin, pretty weird, it's a plant hormone!

I have gotten off at a lot of stops. The geneticist is pondering whether or not to have my genome run....that said, he says he has to find some one interested in studying it. Unfortunately, they could have had 4 generations but my mom died 2 years ago.

I'm going to work on eating some appropriate supplements, get the hole in my ticker checked out to see if it is making matters worse, and hope for the best, which would be things not getting a whole lot worse too fast.