32 years. It began after I had mono, when I was 17, and I was diagnosed last year, when I was 49.
Allison Echols Community Admin
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)
Briar Rose Member
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?
Iris Vasconcelos Moderator
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
I can trace onset of symptoms back as far as 17years... Average time to diagnosis is 8 to 15years.... far too long!!