Both Billylyne5 & Jenng,

Finding an autonomic specialist isn't easy...there just isn't a lot of good ones out there. I waited 9 months for an appointment to my new neuro that is autonomic specialist. They are just few and far between.

I have been to Mayo (has probably the best autonomic testing center in the country) and that's where I was diagnosed with my autonomic neuropathy/dysautonomia. But I wasn't impressed with their neurologist dept doctors at all!!

Start looking at an academic hospital. It would be best if you could get a 'team' with neuro (possibly autonomic specialist) and rheumatologist in same system.

If your insurance would cover it, consider Hopkins to the Sjogren's Center and seek out Dr. Birnbaum (he's both a neuro and rheumy---only one in the country) who specializes in treating patients with neuro manifestations of rheumatic disease. You can set up appointment, get evaluation and he will work with your local doctors for continued care options...where your doctors get his treatment advise for you. This way you only travel the one time and then your doctors know how to follow up with your care. Just a thought.

Billylyne5, you may not have the autonomic symptoms, but might still benefit from the neruo/rheumy team at an academic hospital (or the Sjogen's Center for eval) that can work together to find the underlining cause of your symptoms.