I've been getting really worried about Sam's severe photosensitivity, headaches, and malaise (diagnosed as "migraines"). There are updates to this story!

He was supposed to get an MRI since things weren't getting better. But the scheduling team was really slow and gave us inaccurate info. Thursday morning, I got up early to take matters into my own hands, making many calls and wrapping my head around the scheduling/logistics/pricing.

Soonest I could get was an April 9 appointment. But they advised me to get a "stat" added to the order, so I messaged this to Sam's doctor.

At about 2pm, we got a call back that we could get an appointment in SF (40min away) at 3:15pm. We rushed out the door. (Sam wore an eye mask on the way over. He hadn't left home in... weeks?)

More inaccurate info, more decisions, long wait time... But we got it done.

Since the order was noted as urgent, we got results 7am the next day. They say he's all clear! (Brain + orbits, with and without contrast.) Yay! This rules out tumors and various other serious problems. These problems were seeming increasingly likely to me, since he wasn't getting better.

But also, coincidentally... he might be getting a bit better now? The big MRI day didn't trigger him and he's been fine the last few days. Increased medication dosage MIGHT actually be working. Cool!

(The improvement isn't "he can tolerate a normal amount of light." We haven't checked that yet. The improvement is "if he is maximally careful about light/stress, he feels ok" — previously, we struggled to make him feel not-shitty at ANY level of avoidance.)

I, on the other hand, developed very bad PEM from the experience. 😝 I spent roughly 7pm Thursday to 4:30pm Saturday (today) in bed. I was so depleted that I think my body was struggling to digest food — at least, I think that's why my stomach was in overwhelming pain. That one's new for me.

It's pretty sketch for someone with ME/CFS to push themself like this, but I did it because I felt sure enough that I'd recover. And Sam is very, very important to me. Definitely the most I've pushed myself in a long time.

Anyway, we're really happy to have negative results and possible improvement!