As for the Sjogren's. If you don't have positive blood work, then a positive biopsy is a must. There are set guidelines for the grading of lip biopsies. The Greenburg Scale is the one used by Hopkins and I also believe NIH. You can have inflammation present, but in order to meet the criteria, you must have at least one focus (focus = an aggregate of 50 or more lymphocytes with 4 mm sq). Therefore, you likely had infiltration of lymphocytes, but not a complete focus. But like you said, that change change later.

The neurologist at Hopkins did my skin biopsy, but I understand dermatologist have been trained to do them as well. However, they must be sent to one of the few places capable of reading them...like Glenntaj said.


Autonomic testing can include:

gastric empty study for delayed stomach emptying (eating some scrambled eggs with contrast and laying still while pictures tracking movement are taken for 2 hours)

Tilt table for diagnosis of POTS (postural orthostatic tachycardia syndrome) and NMH (neurally mediated hypotension).

cardiac holter monitor and/or event recorder to confirm heart rate/rhythm dysfunction

QSART (sweat test)

You have a vast array of symptoms which could be autoimmune. I would go ahead with the MRI"s just to be sure to rule out structural problems that may not have been present years ago. There is a new MRI to look at the dorsal root ganglia. Ganglionitis has been connected to Sjogren's. However, this new protocol is likely not available in many places...mine was done at Hopkins.

Diagnosis can take a long time. Sounds like they have looking for quite some time already. Hopefully the MRI's or skin biopsy will hold answers for you.