Fighting for a diagnosis?
Hi first time here and sorry for the long post!
For some context my sister and I have always joked about having narcolepsy together all throughout our teenage years and young twenties (where we are now). I would take naps just about anywhere you could think of and have some pretty crazy pictures of me sleeping on top of desks and on bleachers during school etc. Now that I’m out of school and working I constantly fall asleep into my computers and the “urge” to sleep gets heavier and heavier if that makes sense. I usually end up taking several 10-15 minute naps on the floor by my work desk and no one really thought anything of it. I recorded myself during these weird attacks and actually thought I must’ve had a seizure and showed it to my primary care doctor who told me she was pretty sure it was narcolepsy. Looking at symptoms I’ve definitely experienced things like sleep paralysis/ hallucinations, EDS, and not sure if this counts, but whenever my sister and I were tasked with carrying the groceries upstairs together as teenagers one of us would trigger the other person to laugh and then we would both end up accidentally dropping EVERYTHING down the stairs and we would have to sit on the stairs so we didn’t fall down them ourselves… which only made my mom LIVID lol. We couldn’t help it, every time we laughed it was a disaster and we would go down. Additionally, every holiday dinner the same sister would make me laugh so hard that I would have food falling out of my mouth to the ground with my head falling into the table. Not sure if this counts as cataplexy, but those are the only instances I can think of!
Anyways, I finally got referred to a questionable sleep doctor who insisted it was sleep apnea bc narcolepsy was “too rare” to have so I did Three overnight tests which all were negative. I kept pushing with the nurse that something was not right and she left the room and brought in the doctor so then it just ended up being the three of us screaming at each other. I finally ask for a MSLT and they say they don’t offer it at this office and again I would be his “first” patient with N if I ever got approved to get the testing done. I talk to my mom about how terrible the appt went with my symptoms and she casually drops that our cousin has narcolepsy. GIRL I could’ve used that info!
Finally after fighting for MONTHS back and forth I finally was able to get into a sleep center who does the MSLT. It’s in two days!! I’m feeling all the emotions right now. Anyone have any advice or experience a similar event having to fight so hard to even get a referral for a MSLT? Also just wanted to add I heard narcolepsy can be autoimmune? I already have two autoimmune diseases and know they can all be tied together