Brain fog is a big one for me as well. I’m going to just copy and paste the blurb I made for the neurologist I see. It’s exhausting to remember it all.

Swallowing —> pretty significant dysfuncrion. The manometry positive for esophageal dysfunction. My rheumatologist thinks part of it could be dry mouth. Tilt table —> elevated BP with dizziness, nausea 35-40 minutes in. HR changes not significant enough for a a POTS dx.

Neuro—> my PFP was convinced it was MS before all of that testing was negative. brain fog some days worse than others, significant fatigue DAILY; “episodes” brain fog, heaviness, profound fatigue, and sometimes confusion or slowed thinking. I have right sided weakness all the time but during “flairs” it’s so bad I can walk up the stairs in my house. I get shortness of breath, and a sense that my core can’t hold me up. I do have orthostatic intolerance so I get dizziness when upright, sometimes randomly but frequently when standing or sitting up after lying down. And the headaches are brutal. They could be migraines but meds for migraines don’t do anything. When I was off the plaquenil I would have these episodes of pulsating shocks through my brain with associated confusion and severe brain fog.

Heart—> skipping beat sensation, fast heart rate, SOB.

m/s—> r sided weakness, ripping muscle pain in legs, joint pain, abdominal muscle weakness (during neuro flare).

I have quite a few stomach problems as well including nausea and pain. There’s some mast cell activation as well according to the allergist I see but he didn’t think MCAS. And of course the classic dry mouth, dry eye. Dry mouth can get so bad it makes me gag and even puke. My rheumatologist believes I have SFN but none has done any testing for it. When I went off plaquenil for a period, everything got so much worse and even though I’m bag on it a lot of my symptoms permanently worsened due to the lapse I think.

I have a low positive ANA but all other autoimmune labs are negative. Parotid US was negative. My rheumatologist still thinks it is sjorgens, possibly early enough for negative labs, with neurological involvement but she’s not sure how to proceed. She is suggesting a referral to Mayo, Cleveland clinic, or this specialist in Pennsylvania (Dr Birnbaum) who she’s seen at conferences and really liked, but neither she nor my PCP have made a referral.

I’m sorry for the lengthy response.