I have not posted on here in quite a while. Life pulled me in other directions (raising an infant to a now almost 5 year old). On the Sjogren's, I would advise any one with a positive ANA or lip biopsy to explore an autonomic disorders physician.

I was told I had Autoimmune Autonomic Ganglionopathy, AFTER about a dozen different diagnosis. THAT is the correct diagnosis and I still do fit most of the diagnostic criteria for Sjogren's except for positive SSA or SSB.

I think there are a LOT more of us out there with AAG than any one comprehends because most of us never make it to an autonomic disorders clinic. After 3 years on IVIG I stopped it due to my kidneys trending south and I didn't see enough improvement on IVIG, however there are other treatments, such as plasmapheresis. IVIG tends to be tougher as you age. I am on low dose prednisone right now.

If you have a diagnosis of SFN or PN and have dry eyes, dry mouth, vision issues, severe headaches, especially 'coat hanger' headaches or 'migraines', insomnia, bloating, swallowing issues, constipation, feeling very full after not eating much, heart palpitations, chills, hot flashes, inability to sweat or adapt to either heat or cold temperatures and 'chronic fatigue syndrome'......you may have autonomic issues. The dry eyes and dry mouth tend to put people into the Sjogren's diagnostic work up and when nothing is found by rheumatologists, they don't seem to understand that a neuro referral is needed and the patient is discharged or frustrated enough to leave and not get treatment. I have found very few rheumatologists who are informed on neurological issues.

AAG is a different entity than Sjogren's but the symptoms are very similar in terms of pain, dry eyes and dry mouth. The hypotension of AAG, will eventually leave you with little or limited ability to be upright.