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Hello everyone,
I am suspected to have narcolepsy.
I've been to doctors and a neurologist who all agree with this assumption. Currently I'm waiting to be transferred into a sleep clinic to get the diagnosis.
I'm seriously a bit scared of how that will affect my life and what might happen if I don't get a diagnosis. Has anyone had similar experiences? Can anyone share some uplifting stories about their life with the diagnosis?

  1. Hi . I was thinking about you today and wondering whether you ever go your official diagnosis. How are you doing? Warmest of wishes. - Lori (Team Member)

    1. Hi I feel you and I just got my diagnosis last month. Yeah life feels different, but with diagnosis then it makes me easier to tell the others about my condition. The good thing is, after I deal with the denial and grieving period ofc, I can kinda show some pride of still able to go to work but having narcolepsy. Like, guys, I am still functioning, I only need a longer time to do my job, but I am working nonetheless. Narcolepsy makes my job harder but I'm still doing it. Thankfully people at my office and my friends are supportive. Their most common reaction is that they didn't believe me at first because I don't look sick. They wonder how can I manage my symptom and still working, so I take pride in that. So maybe we can make the symptom as symptom, not to define our identity as a whole. Ofc not to minimize our condition but please don't let the symptom define you. You can always define your life to some extent. Hopefully things work out for you!

      1. Thank you for the warm welcome! I was in fact admitted to the hospital for three days, however nothing was found. I'm currently waiting for my appointment in a sleep laboratory. Fingers crossed they'll find something

        1. Crossing them now! - Lori (Team Member)

      2. Hi . Welcome to the community! I am glad you found us. A new diagnosis of any chronic illness can be overwhelming, but there are a lot of reasons to feel positive. First, a diagnosis means you will be eligible for treatment. Hopefully, treatment will improve your quality of life. A diagnosis also makes you eligible for legal protections afforded people with disabilities and for disability payments should you ever be medically unable to work. The journey is different for everyone, so don't be discouraged by someone else's struggles. You might not face the same obstacles. Here is an article from one of our advocates about her own success with narcolepsy treatment: I hope you hear from others as well. If you don't get a narcolepsy diagnosis, please don't give up on figuring out what is going on. It sounds like your doctors are caring and compassionate and will help you investigate further. The sleep test results will probably show other patterns that might lead to a different diagnosis. Please know we are here for you regardless. Keep us posted if you don't mind. I will be thinking of you. Warmly, Lori (Team Member)

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