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Diagnosis delays

How long did it take you to get diagnosed with narcolepsy? Were you misdiagnosed as another health condition first?

  1. My symptoms started at 17, but I didn’t really think anything of it until I was in my 20s. I saw my primary care provider about tiredness a couple times in my early 20s, but when my bloodwork was normal, I assumed nothing was actually wrong and that my tiredness was normal. When I was 24 and in grad school, I was put on probation because I kept showing up late for class (because I couldn’t wake up in the morning), falling asleep in class, and falling asleep on my clinical rotations. I also started getting new symptoms at that time which really worried me - I thought I had a brain tumor or MS. That’s when I was finally convinced that something was medically wrong with me and started being persistent about getting a diagnosis and treatment. First I was diagnosed with anxiety, then depression, then anxiety again. Eventually I was referred to a psychiatrist who, after one appointment with her, thought I had narcolepsy and referred me for a sleep study and I was finally diagnosed. So, in summary, I was diagnosed 7 years after my symptoms started, but it was only about 12 months or so after I actually started to worry about my symptoms and persistently pursue medical intervention until I was diagnosed.

    1. It was definitely a huge relief to me that my brain MRI was normal. And while I’m so relieved it wasn’t something worse, it also felt very validating that there was actually something wrong and I wasn’t just “wimpier” about being tired than other people or “weaker” because I couldn’t stay awake like everyone else. It’s been 6 years now since I was diagnosed, and about 85% of the time, I am at peace that I have the correct diagnosis. But about 15% of the time, I still get health anxiety and worry that maybe they missed something (like are my symptoms actually from an undiagnosed blood sugar issue, am I having TIAs, etc). I don’t know if it’s common or not for people with narcolepsy to have increased health anxiety, but I definitely do. 😳

    2. I can't speak for other people with Narcolepsy, but I can speak for myself. My experience with Narcolepsy has increased my medical anxiety so much! Even more than an eye surgery I had to have at 18. I hope you are able to find some peace of mind in knowing that you are not alone in this. Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

  2. I had symptoms all my life but around 36yo I started having cataplexy attacks. So it took about 2 years after seeing a neurologist.

    1. I am sorry to hear that it took you two years of experiencing Cataplexy before you were able to get a Narcolepsy diagnosis. Sometimes healthcare professionals are not adequately trained in sleep medicine to recognize Narcolepsy symptoms, which is really unfortunate! I hope you were able to improve the severity of your condition with treatment. Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

  3. For me it was about 18 years. Many of the years when test would come back "normal" I would either be brushed off or told it was just a side effect of depression or depression medication.

    1. I am sorry to hear that it took you so long to get answers about your Narcolepsy symptoms! That must have been so confusing and frustrating for you. How have you been coping as of late? Thank you for sharing with our community! Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

  4. I was quite lucky in that from first experiencing symptoms to being diagnosed, it was just over two years. That two years felt like a horrifically long time but in comparison to a lot of other people’s journey, it was pretty quick.
    I wasn’t diagnosed with any other health conditions, as when I first started experiencing symptoms I waited for about a year before seeing a doctor. In this time I did a crazy amount of research, so went to the doctors with an idea and suggestion of what it was. Thankfully I was listened to and referred to a specialist after just two appointments. My most frustrating part was going through testing at the hospital as my consultant wasn’t the most helpful and I was accused of making my symptoms up because they all seemed ‘too textbook’.
    However, I know that I am lucky in comparison to a lot of other people and can’t begin to imagine the struggles people go through with so many more years of being undiagnosed.

    1. Absolutely, it is so frustrating to be doubted from, as you say, the ones who are supposed to help us! I think we get enough stigma and lack of validity in general we definitely do not need it from professionals. Yes I agree, hopefully with more awareness and understanding we can help to reduce the stigma.

    2. I am glad to hear that you were able to get the help you needed in a relatively short amount of time. My Narcolepsy symptoms didn't fully onset until I was 20 years old. I still had some mild symptoms before my cataplexy and sleep attacks onset, I believe. Unfortunately, without the vocabulary to express what I was feeling I wasn't able to get help for my symptoms until I was much older. Thank you for sharing with us, it is helpful to know that we are not alone in this! Best regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

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