January 25, 2021
How long did it take you to get diagnosed with narcolepsy? Were you misdiagnosed as another health condition first?
April 1, 2021
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.
April 2, 2021
April 30, 2021
March 13, 2021
I had symptoms all my life but around 36yo I started having cataplexy attacks. So it took about 2 years after seeing a neurologist.
April 2, 2021
February 8, 2021
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.
8 days ago
January 31, 2021
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.
February 13, 2021
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.
8 days ago