2 replies to this topic

[Julie A]

I had MSLTs done years ago on 2 seperate occasions. Classic narcoleptic with Cataplexy since the age of 6. Problem is. . .
I went off my meds as a teen due to the side effects. I really need treatment now. I had my MSLT this morning and I definetely rem'd once. The tech said a second time I was "right there" and she would leave the definitive to my Neuro. Of course while waiting for my naps, I had full sleep attacks with dreams and all. Once put on the spot, I just didn't pull through this time. I read the standard for a positive diagnosis is 2 rems in an MSLT.
I am terrified that my diagnosis won't be proven this time. I need treatment as I have given up working and driving.
Has anyone had a similar issue?

Julie A

[Andrea Egan]

Definite cataplexy is enough to warrant a diagnosis. If this is the case, you don't need an MSLT. Many physicians will order a sleep study/MSLT to rule out other sleep problems, like OSA, and to confirm diagnosis, especially if cataplexy is questionable/absent (but again, an MSLT is really not necessary if definite cataplexy is present). If cataplexy is not present and REM was not achieved in at least two naps, you will most likely be diagnosed with idiopathic hypersomnia. Treatment for IH is identical to that for narcolepsy--don't worry about not getting the meds you need.

[Julie A]

Thanks for the reply Andrea.

I got my results today from the MSLT. On the last nap I rem'd after a few seconds and then immediately cycled to a nother stage. I am so happy that the second rem was found and I can begin my provigil tomorrow. I will check in in about a week and if needed will adjust the dose and/or add XYREM. I want to take this slowly though, so as to make sure my treatment is effective.

Here we go!!!!!!!!!