Originally Posted by cyclelops

I chased the Sjogren's bus for 15 years. I have a highly +ANA-nucleolar, and the +lip biopsy, every sign and symptom including dRTA. Many rheumatologists will not even consider it as an option without a +SSA or SSB. I have been nailed with IVIG and IV steroids etc, and none of it helped with my worst symptoms which are all autonomic, including the dry eyes. My thought is, I am going to try to get scleral lenses for that, because I am freaking going blind. I have the diagnosis (negative SSA-B), but it has been meaningless for me. I won't discourage you from searching for an answer, but, it may not be Sjogren's and if it is, treating it doesn't always work, that is, if it is or isn't really Sjogren's. Rheumatology is one of the MOST disorganized specialites. I use the word disorganized because I don't want to call it what it really is.

I stopped my IVIG a few months ago, since it seemed to be making me more sick than not, after 3 years of it. It does wonders for some folks. I am not one of them I guess. But, I would not fault any one for trying.

I am curious tho, why there is such a profound increase in the number of severe dysautonomics and the LACK of solid research and lack of centers for treating this. Autonomic neuropathy is very serious and it seems that there is just no solid organization in terms of diagnosis and treatment, or should I say managment.

I am sitting in bed with over my head right now, so, take this post with a grain of salt. I don't mean to discourage you. Definitely get tested for autoimmune disease, but it is a whole 'nuther can of worms.