My goodness, you really have been through a lot Yorkiemom. I too would try to avoid the lip biopsy.

I have Sojgrens Syndrome, diagnosed through blood markers, dry mouth and dry eyes. Do you have dry eyes and mouth?

Could you periodically repeat the bloodwork? If you have SS, would it eventually show up?

Would you mind saying what osteoporosis medication caused you trouble? My rheumatologist wanted to put me on Forteo, even though my bone density was actually pretty good. Long story...but I said "no," for a variety of reasons. Perhaps in the future, but I really really really need to think about it.

Recently, I developed neuropathy in one foot. What was very upsetting to me is that my rheumatologist acted like this was weird and unexpected. The neurologist I go to ordered a nerve conduction test and it was fine. The tester said that I should have a small fiber neuropathy test, but the neuro said that I didn't need it at this time and if the neuropathy worsened and I wanted the test than maybe I should have it. apparently it involves a couple of tiny incisions on your leg.(this neuro is very kind and perhaps he didn't want me to suffer with any more pain at this time).

The Sojgrens society literature talks about neuropathy being rather common for us and also talks about the lack of information/education among medical professionals about SS. Honestly, this has been my experience.

How long will you have to do IVIG? When do you start? Wishing you well.