New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Narcolepsy confirmed as autoimmune disease

Discussion in 'Other Health News and Research' started by Bob, Jan 3, 2014.

  1. Bob

    Bob

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    England (south coast)

    The Study:
     
    Justin30, MEMum, Valentijn and 6 others like this.
  2. natasa778

    natasa778 Senior Member

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  3. Bob

    Bob

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    Thanks Natasa. I missed that thread and any others on the subject.
     
  4. xchocoholic

    xchocoholic Senior Member

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    I'm pretty sure that I had narcolepsy but it went away 7-10 days post gf diet. I'm not sure if this is common or not.

    My sleep disorder test was negative BUT I have myoclonic jerks that stop me from entering REM. If I'd entered REM, I was told I would've been positive. There was
    no chance of me entering REM back then.

    I take Klonopin for myoclonus so I can sleep.

    Tc ... x
     
  5. out2lunch

    out2lunch Senior Member

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    I realize this post has aged a bit, but this addresses my issue with narcolepsy/cataplexy symptoms I've had for decades. (BTW… my symptoms did not go away with GF diet.)

    My MLST was also negative; quick sleep onset but no REM. And I've been told lack of REM means I don't have narcolepsy/cataplexy. (Even though I have the gene, narcolepsy runs in my mom's family, and my symptoms are classic.)

    What bothers me about the diagnosis is that it's based on lack of REM during the daytime naps. What if you don't produce REM at anytime? Does that mean you absolutely can't have narcolepsy or cataplexy?

    My PSG done the night before the MSLT showed hardly any REM the entire night. Less than 3 minutes of REM during 4.5 hours of sleep. So how would I have had REM intrusion during the daytime naps if I didn't have REM at night?

    I don't experience myoclonic jerks or restless legs, etc, so who knows why REM is absent in me. Other than mild to moderate apnea that is very well treated with Auto PAP, I don't have other sleep issues like insomnia, waking hallucinations, et. al. Just the FMS typical lack of deep sleep and REM.

    There is no explanation for the lack of REM other than ME/CFS/FMS. And my cataplexy symptoms have always been more pronounced than the narcolepsy symptoms; I often don't get any sleepiness when my body turns to a rag doll. Which baffles my Stanford sleep neurologist, who said cataplexy and narcolepsy go hand-in-hand 99% of the time.

    I've had other autoimmune diseases in my life, so having narcolepsy would make sense. I just don't understand why narcolepsy must be tied to REM. Why aren't variants a possibility in people without REM, like me? I don't get this.
     

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