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I know how frustrating it is to not have an accurate diagnosis. My MSLT sleep tests (I took 3 sets) diagnosed apena only. I know I have narcolepsy. Anyway after 2 neurologists (one was a sleep disorders specialist) and 2 regular MD's and four ER docs, I was finally able to find a sleep disorders specialist who helped me. They wanted to do the spinal tap test but I refused. I had every test X 3 by then and knew I had narcolepsy so didn't feel the need to prove it to the stupid docs. A good patient history is cheap and goes a long way as a diagnostic tool. Guess it is to outdated or something. Anyway I am sorry to hear you have to go through this on top of trying to cope with narcolepsy. I use my cpap every night, take prozac 40 mgs to supress REM, ambien to sleep at night and ritalin to stay awake during the day. I'm a walking drug factory lol. Hang in there. Gotta go get presentable, my ride is coming to get me so I can vote. Danita in Illinois
----- Original Message -----From: Be Our Eye A InSent: Tuesday, November 02, 2004 4:32 AMSubject: [Narcolepsy-Chat] Good Days, Bad Days...
While I am "officially" diagnosed with Apnea, I still come here to
share my ideas because I feel strongly that I have either Narcolepsy
itself, or some other sort of problem that closely resembles it. As
I said before Apnea is what I have to Dr. and nothing more,
regardless of how many times I've tried to explain to them about the
fair amount of "mild" cataplexy I feel a lot of the time upon being
suddenly surprised or something as simple as thinking really hard to
remember a name or a place then all the sudden i do, this is when
cataplexy (while mild in me) hits....those with it know what it feels
like....so even tho i have CONSTANT battles with Sleep Paralysis and
Still have a hard time not "falling out of it" when laying down and
trying hard to stay "awake", the Provigil at least keeps me from
losing my job....although while im home I dont tend to take it like I
do when I have to work....at any rate, Dr. actually says "Looks like
we're trying to outsmart each other on this"...referring to the fact
that I keep bringing up N when my tests didnt "show" it...to which I
said "well it may very well not be N, but it sure isnt JUST
apnea"...at which point he said to go to my regular doctor and he
would suggest i be referred to a neurologist....which I dunno how
that will prove anything one way or the other due to the fact I've
had many head injuries in my life...I dunno tho really, things are
just really hard for me...I find I cant lay flat on the bed, no
matter how hard I may try, and stay awake for more than 5
minutes....however if i tilt my head and body up to a sitting
position, it doesnt seem to come upon me that quickly....I constantly
do the whole 'jibberish' talk when these things are happening because
im either trying to tell the other person whats going on and not to
panic plus Im trying my best to understand that Im going to be
aggrivated from this life from time to time by ceratin other people
in it, but if I let that kinda thinking rule me I am seriously
running the risk of being controlled by my body instead of being in
control of it...
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