Well, good to hear you are at least being treated with Plaquenil and Restasis.

Finding an autonomic specialist isn't easy, so hopefully you have hooked up with a good one. The Mayo does have a good autonomic testing facility and they are the ones who I believe started trials with Mestinon. You might want to inquire about this medicine as it has potential to really help in some cases. Just didn't work for me...but I have many drug reactions.

http://en.wikipedia.org/wiki/Pyridostigmine (mentioned in Clinical uses section)

I know all about 1 Gram IV steroids. I would get this 3-5 days in a row sometimes each month. I also did the high dose daily route at the beginning of my disability (1996). On/off steroids since then have of course cost me dearly in horrific side-effects (thin skin, osteoporosis with a current broken ankle from a fall, and Cushing's syndrome) and I'll never be able to get off Florinef as my adrenals won't make aldosterone anymore.

I receive IVIG for PID (Primary Immune Deficiency) but starting this month we are slowly increasing the dose to neuropathy levels (2gms/kg) over the next 6 months in order to help halt or at least slow progression of my autonomic and peripheral neuropathies. I am at the point with the orthostatic hypotension/NMH (neurally mediated hypotension) of having times where I am not able to maintain an upright position for any length of time (sometimes that can be just 5 minutes) without systolic BP dropping into the 60's or 70's. If there is anything that I can pass along to you, it's advise to NOT let it get this bad before you look (EVERYWHERE) for halting progression. Do everything you can NOW to preserve what you have and improvise, adapt, and overcome your current deficiencies.

One note about your comment on carbs bothering you. Gastroparesis commonly causes a condition called Small Intestine Bacterial Overgrowth (SIBO). It's from the lack of motility allowing bacteria to move up into small intestine...and even into stomach. This can cause increase bloating, nausea, discomfort, etc. CARBS/sugars feeds this bacteria and make it worse. So you may actually have some SIBO going on as for why you have increased problems with carbs. There is a special antibiotic (Rifaximin) that only works in the GI that can be used to help this. Other antibiotics can also help. But avoiding carbs and taking a probiotic is helpful. You really might benefit from a gastric empty test/study (eating some contrast laced scrambled eggs and lay on a table being scanned for a few hours) to see how bad you motility is.

There are of course things you can do to help this as well. Eat small meals, nothing after 6 pm to avoid nighttime symptoms, elevate head of bed to allow gravity to help emptying at night, gastroparesis diet to avoid raw veggies, fruits & nuts (hardest to digest), mechanical diet to grind meats in a processor/blender (they still taste the same), walk after eating, and take Domperidone (not available in the US, but most doctors will Rx it for getting in UK or other European countries).

If you have Sjogren's and IT'S what's causing the autonomic dysfunction, then it is likely permanent and slowing progression is the only treatment (other then symptomatically). My neuro/rheumy at Hopkins (only one in the country to be both specialties) specializes/researches in neuro complications of Sjogren's. According to him the Sjogren's can cause damage directly to the dorsal root ganglia (DRG) and autonomic ganglia...this is why it's permanent. They confirmed this with me by doing a special MRI/MRN to look specifically at the DRG. Mine is bilaterally enlarged and has increased signal...consistent with ganglionitis. This may be what you have. Google some of this, read, and discuss with your doctor in August.

Good luck and if you have any questions, I'd be happy to help with whatever I can.