I am so in agreement with all of you!! One thing I have learned through all of this, is how many misconceptions regarding Narcolepsy there are. People are so stubborn and quick to make statements that are not even true.
Dormir... I feel so much for you, because we went through the exact same thing with our MSLT. For me, not only did I have all those wires hooked up to me, but the room was freezing cold, housekeeping was banging stuff all day, the sound of ambulances was happening every five minutes or so, and my anxiety was through the roof. Normally my pulse is around 56bpm, and during my sleep study it was around 90-100bpm. With all that being said, how is anyone, even those with Narcolepsy supposed to fall asleep?
Now put me in a bar, restaurant, friends house, or movie theatre, and I'm out cold in less than three minutes. That's where they should have done my MSLT
I think you should exist every option and opinion out there. I would start with the Neurologist first. I hope for your sake you are able to get some answers and a resolution to your problems. I think the scariest thing about this all, is not being able to get an answer and having to live the rest of our lives like this.
My Doctor that referred me for the sleep study, is also the Doctor I work for. He knows something is up, because he see's how phyiscally exauhsted I am on an everyday basis. Although he said the sleep study was inconclusive yet abnormal, he still wants to refer me to a Doctor who deals with Narcolepsy.
With that being said, I have an appointment Feb. 15th with the Cleveland Clinic. I will be seeing the head of the Sleep Disorder and Pulmonary department. This Doctor not only specializes in EDS, but N as well. So I am hoping I get some sort of an answer.
Fingers crossed for us both