So I am in the middle of my MSLT today and thought I'd log on and see what everyone was talking about. I am hoping that this test finally gives me the answers I've been waiting for, but I am feeling quite skeptical. I usually can sleep ANYWHERE, but I am not falling asleep during my naps, which is very odd for me. I guess its all the wires and noises (they had fire testing ect during my nap times lol). I think I am psyching myself out because I know this test is so important and I don't' want to mess it up. I am curious if any of you had trouble sleeping when it matters the most? Will narcolepsy still show up
When I took the MSLT test I had a little bit of anxiety because I was afraid that if I wasn’t able to fall asleep under pressure that I wouldn’t get any results. However, it’s funny because I think it was either 1 or 2 of the naps I swore I never fell asleep and the tech told me that I did sleep. I was told that happens to many people. But yes it seemed like I was trying to concentrate on falling asleep too much and then to find out I was sleeping within minutes and thought I was awake for most of the 20 minute nap.
thank you sleeping beauty. I had the same thing happen.I didn’t think I slept at all and she said I did. During a couple of my naps they were having construction work done and all the banging was from them so my next nap they were finally quiet lol
Arowland, when do you get your results back?
They said the longest would be ten days..to me forever!! I was asking the tech if I had to take the test over if I would be charged because of the noise and she said trust me hun we won't have to do it again. So that made me think they got what they needed. Do you think that means I have narcolepsy? Does this test for anything else?
Still a week to go. You will have to keep yourself busy to get the time to fly.
I felt huge relief when I was diagnosed with my condition even though there is little that can be done to help. I would have been devastated to be told that in spite of the symptoms they had no idea what was wrong.
What will you feel if they say it’s not narcolepsy?
Nel as strange as it sounds I will be disappointed. I’m exhausted at searching for an answer. If I get this diagnosis at least I won’t be crazy and I will have a wonderful support group to help me! Is it bad that I will be relieved and will not be so hard on myself and take breaks when I need it. Not that I want an excuse but I don’t want others to think I’m lazy.
And then you will have to set about educating family, friends and colleagues as to just what narcolepsy is and there is lots of information in the net and youtube videos to help. Counting down to next week…
The same thing happened to me when the Medical Advisory Board ordered another sleep test for me. I felt so alert that I didn't think I would fall asleep either. It turned out that I did. Each time still within 5 minutes or less. You are definitely not alone on this one Arowland.
I agree with you and Nel on how relieving it feels to find out the results are positive. After all you have suffered, to be told that nothing can be found and what is going on with you can't be identified, would make you look like the problem to everyone around you. That would be a devastating blow!
What makes me sad for so many of you is that you have been diagnosed and people still seem to see you as the problem! At least YOU know that you are battling with a real disease which has a name and can go forward finding medication to help and ways to manage.
Arowland I think you have your answer here; I have seen this on other groups on the Internet too, people worrying that they didn’t nap but finding that they definitely did. I love this group and the way you support our newer members.
Ditto Nel :)
I called my neurologist this morning to find out the results of my sleep study. The nurse said I have a diagnosis from the day test but she couldn’t tell me. I have to wait for the doctor and he isn’t in until Friday! I just wondered if the MSLT tests for anything other than narcolepsy?
Oh darn. That’s very frustrating. I hate it too when the nurse, who I imagine sitting their with my results on a piece of paper before her eyes, tells me that I have to appear in person to get MY results.
As far as I can see the MSLT is only looking for narcolepsy or idiopathic hypersonic
Roll on Friday!
I too didn't think I fell asleep. Of the five naps, I thought maybe I fell asleep once. I could have sworn I laid there awake for the entire time. My results were that I fell asleep all five times and was in REM in less than three minutes four of the five naps. It's funny how distorted our perception of time is. The wait for results for me was also a test of patience, but I cried when I got the diagnosis, as I had a name I could throw out as to why I was tired all the time. Even though I am diagnosed, people still see me as lazy sometimes, so that may not completely go away. Even if they say you don't have narcolepsy, keep pushing till someone gives you an answer as it (for me anyway) is easier to have something you can have a name for than not knowing why you are the way you are. Good luck!
Thanks for the feedback Tired! Just curious if you have any other symptoms other than EDS? After connecting with this community I feel like all these little quirks that I have and I just thought it was me, may be related to N.
The nurse called me back and said that the doctor would like to discuss the details of my sleep study in person and not over the phone. So I have an appointment on Monday, I can't wait, like you say to have a reason to be the way I am!