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Question on Narcolepsy, Medications and Test Studies


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I wanted to reach out and ask a couple questions on Narcolepsy, Medications and Test Studies.

 

I have Narcolepsy, basically had it since childhood but the last 4-5 years have been the worst and finally decided to try some medications within the last 6 months after trying everything else and going through multiple testings to rule out other disorders like chronic fatigue syndrome, Sleep Apnea, Anemia, Depression etc.

 

I have seen some newer studies coming out in regards to Narcolepsy and possible genetic relation to HLA Genetics that are also found in numerous Auto Immune Diseases.

 

In addition several of these Auto Immune Diseases in relation to Narcolepsy are saying that a good indicator of "Severity" is the "Hypocretin Level" as well as the HLA Antibody DR and DQ Levels?

 

I have a a severe Auto Immune Disease in addition to Narcolepsy and was possibly interested in asking my doctor or inquiring about a "Hypocretin" Level or HLA Genetic Test but wanted to know if anyone else has heard about this or has had these test done? And if so what was your severity level? And did it help in determining a better treatment option for you? And do you feel treatment post testing had significant improvement versus pre-testing?

 

I heard the testing is very expensive and don't want to waste money but also have concerns on current treatment and dependence and becoming immune to treatment and medications when I hate taking the medications but also can NOT function without it to stay awake during the day or work or take care of kids etc?

 

Any thoughts on testing and improvements found in treatment and outcomes?

 

TIA

 

SpiralingMotherOfFour

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I had a hypocretin test done ... it is done via a spinal tap, then sent (wherever).  When I got mine done it was for a study at Stanford University, and all the bloodwork etc was sent there.  It was a free test because I was part of a study, so I am not sure if it would be covered by insurance. My results came back negative. 

 

Apparently though (from what my neuro told me) there is room for error in terms of being a false negative, or it could be a false positive.  It sounded like what was the point of the test then, so take that FWIW.

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I am about to get a day time sleep study to see if I have narcolepsy. My sleep dr. is going to put me on provigil or nuvigil too. I'm not sure if this will be before or after the study, which is coming up in a month. I'm so tired all the time! I can't stay awake and get hit with sleepiness like a ton of bricks during the day. I then don't sleep well at night without a sleep aid.. Fucked up sleep I tell you!

 

I've never had the hypocretin test done. It doesn't sound pleasant. I hope the day time sleep study will be sufficient. Ugh. That will be a struggle in and of itself.

 

I hope you find the answer and can get to feeling better and less tired soon!

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