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How long did it take to get diagnosed with narcolepsy?

  1. Approximately 50 years. I'm 82 years old.

    1. 32 years. It began after I had mono, when I was 17, and I was diagnosed last year, when I was 49.

      1. Wow , thanks for sharing! Did you always suspect that it was narcolepsy or did you think that it was something else? Best, Allison (Team Member)

      2. Sorry for the late reply.No, I never suspected Norcolepsy because I don't have Cataplexy and that's what I thought of as Narcolepsy. I had no idea there were 2 types. I thought I was just lazy or addicted to sleep. It makes me a little sad to look back on moments in life that would have been a lot different if I'd known and was officially diagnosed. I want to call people from the past and say "I'm not a loser! I actually have an explainable condition!"
        It's almost been a year since my diagnosis and I still doubt if it's actually Narcolepsy. I'm so convinced by a whole lifetime of conditioning that it's because I'm faulty somehow. The tests clearly point to it though. I sometimes reread the diagnosis notes to remind myself that it's a whole different outlook now.
        What about yourself? How has life changed after getting a real diagnosis?


    2. 40 years

      1. Oh my gosh! I'm so sorry Cannot imagine what those 40 years were like! Hope things are better for you now! Take care, Iris x

    3. I can trace onset of symptoms back as far as 17years... Average time to diagnosis is 8 to 15years.... far too long!!

      1. Totally agree! Far too long indeed!

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