pinklady72191

Starting The Process

30 posts in this topic

They just stopped at four because the guidelines say you have to have at least two SOREMs to be diagnosed with narcolepsy, so if you haven't had one in the first four, they let you go because the highest number of SOREMs you could have with an extra nap would be one.  Not a monetary thing, just math.  It's all pretty arbitrary anyway.  Hopefully someday they'll have blood tests to catch most cases of IH and N so people won't all have to go through all this to get diagnosed

 

My MSLT was stopped after four naps because of no SOREMs, and they said it was pointless to do the 5th because they were looking for at least 2. But I have cataplexy...so it's pretty clear that this test is awful. 

Share this post


Link to post
Share on other sites

same here Crumples.

 

I could  not nap at all in the MSLT - oh in the first one I apparently fell asleep for 30 seconds. I have a cervical spine condition which stops me from lying down so yeah, after the next two naps failed, I went home.

 

thankfully, on the strength of my C and the fact that they caught a microsleep or 2 on the tests before I went to be the night before, I was diagnosed and started treatment.

 

oh the joys!

Share this post


Link to post
Share on other sites

I left my MSLT very frustrated thinking that I was never going to get any help, but I think I got lucky and have a good doctor. 

Share this post


Link to post
Share on other sites

MSLTs are ridiculously unreliable. I think if someone has cataplexy the diagnosis is obvious. Unfortunately they don't have an diagnostic test for cataplexy. If treatments for narcolepsy weren't all controlled substances, no one would care about this stuff.

Share this post


Link to post
Share on other sites

One of the things that concerns me the most is when I read on these forums what other doctors have said (like "well you don't fall asleep mid-sentence," etc.). It seemed to me that within minutes of talking to me and asking me questions my doctor had a pretty clear idea of what was wrong. It's very scary to me that so many doctors seem to misinformed or uneducated. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now