Hi MacMac, unfortunately, nope.
I’ve had a pretty big constellation of symptoms though, many of which are additional to those listed above, so it’s a bit hard to say if they are a similar issue (commencing with severe, arthritis-unrelated fatigue, BPPV - benign positional vertigo - tinnitus, extreme ear pain, fullness and crawling sensation in ear, TMD, severe but transient headaches, one sided optical migraine, low grade fevers, and night sweats, then I had a remission, then relapsing to chronic headaches, apparent poor sleep quality with severe fatigue and daytime sleepiness, night sweats again, the shakes, balance and coordination issues, raised intra ocular pressure, transient blurry vision and, of all things, constipation - I haven’t had that since I was 16 - usually have IBD associated diarrhea when I’m sick).
Like you, I even had a brain MRI (actually after they ruled out arteritis).
I’ve been diagnosed with mild sleep apnea, but obviously that doesn’t explain half of it.
My Rheumy thinks it’s nerve related (and whilst you have all gathered I don’t like his personality, so far he’s been annoyingly right on the diagnostics).
My Physio has also suggested nerve related - of the trigeminal nerve - possibly some sort of indirect effect of joint / tendon inflammation affecting the trigeminal nerve.
I guess they’ve ruled out most dangerous things, so, until it presents more clearly, when I need to be on my game, I take steroids (as they seem effective - only the fatigue is somewhat refractory and can require 25mg a day to knock it on the head).
I have an extra complication in that I have MGUS bordering on smouldering myeloma (amazing how we, and the medical leofesdion, ‘use’ the definitions to our needs at the time!) and the Rheumy had also suggested that as I seem to be very ‘sensitive’ to my body’s situation, even though I have no blood results that indicate I should have symptoms, perhaps I’m receiving early danger signs.
But it does give you perspective on things! I’m spending the inheritance WITH my daughter, while she’s still young
That was a very long post, didn’t mean to distract or hijack, just to say that whilst I haven’t found an explanation for my symptoms, they are indeed a bit weird, so you might indeed find one for yours.