Worth getting formal diagnosis?

Index Support Center Forums Treating Narcolepsy Worth getting formal diagnosis?

This topic contains 4 replies, has 4 voices, and was last updated by Ferret 3 days, 22 hours ago. This post has been viewed 103 times

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    Participant @dreamingofsleep

    My neurologist (one of my best friends) over the last 15 years has been incredibly helpful with my situation. I haven’t done the MSLT to get a formal diagnosis, but I have upper body cataplexy during orgasm (total crumpling onto the person, thought it was some form of epilepsy in high school), and the “ability” to go almost directly into REM after closing my eyes.

    Originally, a different doc advised me not to get the diagnosis because it would wreck life insurance for me. Anyhow, I’ve tried pretty much every standard sleep medicine and stimulant that is around without needing a formal diagnosis.

    The one thing I haven’t tried is Xyrem, and it seems I need a diagnosis for that. Is that true?

    I also have sleep apnea and and almost 100% compliance on CPAP. I’d prefer not to do the MSLT and have a bad night and wrecked next day. I am assuming I wouldn’t use the CPAP but I could be wrong about that.



    Participant @natdoc

    Actually if you are currently on CPAP for OSA and are compliant you will use the cpap on your overnight study, as a matter of fact we use this night to retitrate if necessary. On the MSLT some labs give you the choice during your naps to either use or not use the cpap.
    Personally, I think that if this is your “normal” day and night and you are experiencing cataplexy then this is what I would want to see on PSG/MSLT.
    As far as being able to obtain xyrem it is almost totally up to your insurance company, some require results of PSG/MSLT and others could care less. You do NOT need these tests for a definitive diagnosis of type I Narcolepsy.
    I have not heard of anyone not being able to obtain life insurance simply as a result of having narcolepsy, I think you were misinformed on that front.
    I wish you all the best.

    Participant @purpley

    I have not heard of anyone not being able to obtain life insurance simply as a result of having narcolepsy, I think you were misinformed on that front.

    Oh no, not misinformed. Life insurance and disability insurance will either be denied or incredibly expensive, if you’re trying to get it on the open market. Usually the only way to get either one is to have it as a benefit from your employer. People with N are more likely to go out on disability for a really wide variety of reasons (like basically anyone with a chronic illness) plus have increased risk of accidents. Don’t know the mortality data but I’m guessing life expectancy is a bit shorter as well, not enough for any of us to freak out about but enough that insurance companies, which only care about how the odds tables look, will turn folks with N down.

    However, you might want to look at your medical record if your doc is telling you to keep the diagnosis off the books but prescribing stimulants. It doesn’t matter if the doctor’s used the billing code for N or not, if you don’t mention it in your application and the insurance company requests medical records before paying out — which they sometimes do — and it’s clear what you were really being treated for, your beneficiaries won’t get a dime.

    Reminds me of the good old days of “pre-existing conditions” when having N meant you couldn’t get health insurance either. And if the current administration has its way in overturning the Affordable Care Act completely, we’ll be right back in those “good ol’ days.”

    "Even a soul submerged in sleep is hard at work and helps make something of the world."
    ― Heraclitus, Fragments

    Participant @natdoc

    My apologies you are absolutely right, apparently PWN may be able to obtain life insurance but at a higher rate. I did a little digging after reading your post and found one study comparing mortality rates for people with Narcolepsy vs. the general population. (attached). I am not sure I agree with this study though as even they will admit in the study they were unable to identify actual causes of death in the narcolepsy population so even though the study shows a higher mortality rate for narcoleptics, actual cause of death is not identified.
    This idea of denying insurance of any kind to PWN is very disturbing to me, as is denying insurance for pre existing conditions.
    Perhaps if our lawmakers had to purchase their own insurance on the market as many of the rest of us do maybe then we would see some change.

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    Moderator @ferret

    Being denied anything that “normal” people get absolutely galls me.
    Stupid study because not naming the cause of death leaves out lots of variables. Like saying death by driving a car… whuh?
    I’m 68 in December and have lived with Narcolepsy (and cataplexy) since I was 35. I fully expect to die of old age… and it won’t be because I’m N type 1.

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