How Long Did It Take You To Finally Get Your Narcolepsy Diagnosis? Were You Diagnosed With Any Other Sleep Disorders First?
Around two years after my symptoms became so bad it effected my ability to work.
I was lucky because my father paid privately for my sleep study or it would’ve taken a lot longer.
After my e.e.g my neurologist tried to convince me to take epilepsy medication…saying he knew I didn’t have it but it might help! Seriously!!! His first react when I told him my symptoms was to roll his eyes and say “ has someone been on google looking up how to get controlled medicine prescribed “!!!!! I’m not kidding!! I hadn’t even heard of narcolepsy then. Sadly he is still my neurologist 20 years later! Better the devil I know lol
Looking back now knowing my diagnosis I can see that I had symptoms a long long time before they got bad enough for people to tell me!
Almost 20 years. COVID triggered it into super powers which got the Drs attention more.
It took a little over 5 years. Everyone was convinced it was depression. I was finally taken seriously enough to be referred and the first sleep specialist took one look at me and said I must have sleep apnea. Took several at home tests and didn't have it. Did an inlab sleep test and showed mild. I was completely compliant with CPAP and had NO improvement. Finally switched providers and had another inlab, this time with the MSLT and boom, narcolepsy.
Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?
Treatment For Narcolepsy Without Diagnosis
Did Anyone Else “diagnose” Themselves First?