Narcolepsy DX without REM in test?

Failed isn't the same as negative MSLT. I hit REM on naps during one of them but the tech was being a douche and refused to "count it" because I kept falling asleep between the scheduled naps (they also screamed at me a few times and slammed the door on me over it). One MSLT they ended after one or two naps because while I did hit REM rapidly they wanted to claim because I "had problems" sleeping the night before (had an allergy attack thanks to their musty and dusty room) that it was invalid. The list goes on with issues like that, with fun things like "our equipment wasn't recording" and so on. I mostly blame their lousy health network and ancient facilities for the ordeal and for wasting so much of my time - two weeks with zero stimulants for each test was devastating for me and nearly cost me my job.

Despite the ordeals, I did get it approved and took it successfully for a long period. I (along with doctor support) made a case with an advocate to my insurance that at 45k+ per MSLT attempt, I had already exceeded the cost of a year of Xyrem in under six months of testing costs and would repeat the test every two weeks until it was "positive" unless they agreed to do a trial run since it is the only medication approved for cataplexy, which was already diagnosed and that the MSLT does not confirm or deny. They agreed to do a trial run of Xyrem for three months to treat the already diagnosed NwC and see if it helped. It did, and insurance didn't say another word about it, they covered the costs and did not require further testing. The last two insurance companies I've been with did not have a requirement for the MSLT to cover Xyrem.

/r/Narcolepsy Thread Parent