The official term was a vasculopathy/vasculitis of unknown origin, which is why they were so keen to do a brain biopsy right from the start, which, when the different treatment options were presented to Barbara while she could still speak, she did not want to do, opting instead for a steroid treatment. So they did that - 1,000 mg of a steroid I can't remember the name of that didn't do anything except give her tremors and agitated her to the point where she was constantly scratching, itching and moaning for 24 hours a day, and then because of the amount and type of steroid used (which the way it was explained to me was that it lowers your immune system so it can essentially 'reboot' itself), it will now take TEN WEEKS - 10% a week - to wean her off the steroids to a point where it's 'safe' to conduct a brain biopsy. Ten weeks of ongoing agony that will hopefully lessen in intensity as she comes off the steroids. "Oh yeah, we forgot to tell you that; our Bad."
You explain about the steroid treatment and what they want to do, she agrees, you sign off on it and after her side-effects rear their ugly head the doctors at the largest 'teaching' hospital in the state scratch their heads and say 'well, yeah, that's a side-effect that happens sometimes. Hmmm, well, That didn't work, so now we have to wait ten weeks to get her off the steroids until it's safe enough to drill a hole in her head and take out some of her brain. OR, we COULD try an even STRONGER steroid treatment with cyclophosphamide, a chemotherapy drug that decreases the body’s immune response even more and comes with an array of unpleasant side effects like severe vomiting, inflammation or cancer of the bladder, diarrhea, sores on the mouth or tongue, weight loss and other fun stuff - But at least we’ll find out what caused her strokes; why don't you guys talk it over and see what you want to do."
So again, after five months in the hospital, you explain what they want to do, and after being 'treated' for two and a half months while her steroid levels come back down to a safe level, she tearfully agrees to a brain biopsy. Doctors assure us that "This is the GOLD STANDARD for determining what exactly caused her stroke" and we once again hopefully put our trust in these doctors who ostensibly know what they are doing.
(It's the way I tell it...)As an EMT told me once on one of Barbara's trips in between medical appointments, "That's why they call it 'practicing' medicine....'
Anyway - they do the surgery, they once again without consulting me put her on ANOTHER steroid right after her surgery to "keep the inflammation down" which causes her more discomfort, itching and literally screaming agony. Have you ever watched your wife, completely "out of it", itching, screaming and crying (oh yes, and other things too but I'm not going into that here) for about, oh, three hours and there's not a damn thing you can do about it...? The nurses tell me offhandedly "Yeah, some people have a hard time coming off the anesthesia..."
I demanded (not 'asked') that that steroid treatment stop, Now! Some doctor that I had never seen before (and strangely never saw afterwards) tells me that her signs are all good, so Sure, why not.
We wait a week or so, and the results come back Negative. Nothing. There is still no reason why she had her strokes, two on the left hemisphere, two on the right and one right in the middle.
Barbara was perfectly healthy until her employer mandated she get her Covid vaccine.
But at least they finally got their 'gold standard'.
. Heck, I spent 40 years trying to FIND her, I'm not going to give up now! 
