August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
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  1. Lee Ann

    Lee Ann

    Hi everyone,
    I got the results of my first sleep study test, no sleep apnea. The doctor strongly suspects I have narcalepsy and wants me to have a day time sleep test. Has anyone here been diagnosed with this disorder? I'm not sure how I feel about this. I have been told so many things, its difficult to really believe anything at this point. Just wanted to get your thoughts. Just feeling blah.
  2. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I have had the sleep study and the daytime (nap test) for narcolepsy and mine came back as moderate to severe narolepsy without cataplexy. The thing to remember is narcolepy is an autoimmune disease and although we do get diagnosed with it, I'll always wonder if we were cured would that diagnosis be overturned. think it would because the one thing we all have in common is just a completely messed and ever changing sleep pattern, which is probably due to an erratic cortisol rythm or some other hormone dysfnction. We have no recourse at this point like we do any of our other symptoms and that is treat the way we need. This disease just strings out so far in a circle and we don't know where it starts or stops. This circle is very much different for some of us, but there is still not a start or stopping point.

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