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Another update on figuring out the Chronic Something-Or-Another: sleep disorder specialist edition!

Sleep specialist: "So for 99% of my patients, I would have them do the home study before we consider doing an overnight, but you are not 99% of my patients."
Me: "Oh?"
Sleep specialist: "Like, you are FAR sleepier than most of the people I see. Very, VERY sleepy. Even though it affects only 1 in 2000 people, in your case, I'd actually suspect narcolepsy."
Me: "Oh. Huh."

He asked if I drove here, was visibly relieved when I said I took a rideshare, and then when he was leaving doubled back like "just to make sure, when you say you don't drive, you mean you don't drive at all, right?" (We do not even have a driver's license for exactly the reason we're seeing him, LMAO.)


But yeah! Narcolepsy! One in two thousand! (Though that's not counting all the people who are undiagnosed - of which there are a LOT, because the testing is expensive and involved and insurance is dumb.) We won't know for sure until we can get the overnight study done in July - unfortunately, there's a lot of setup involved and the earlier available dates overlap with A Lot Of Other Stuff Happening. But of all the things we've looked at with various specialists so far, it seems like the closest match.

It doesn't really explain the pain, but our pain does seem closely linked to exhaustion. Namely, it tends to show up when our body is screaming for sleep and we Push Ourselves instead, and attempting to pull all-nighters in the past has led to us coming down with something resembling the flu, every time. So, as we see it: since treatment for narcolepsy is about managing naps so they're less disruptive rather than just suppressing them, maaaaybe treating one will still treat the other...?

There's also some speculation about how some forms of narcolepsy might be autoimmune in nature. Namely, the immune system attacks the parts of the brain responsible for making a peptide that regulates sleep. This would line up with one of our autoimmune markers being elevated, but I'm a bit leery of making things Line Up Neatly. At this point, the hows and whys can wait until after we confirm the what. Hopefully... hopefully!


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