This probably won't surprise you. I found it on the National Center for Biotechnic Information website

The AWAKEN survey: knowledge of narcolepsy among physicians and the general population.
Rosenberg R1, Kim AY.
Author information

11Director of Research, NeuroTrials Research, Inc; Director, The Atlanta School of Sleep Medicine and Technology, Atlanta, GA. ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■.
Narcolepsy can be a debilitating sleep disorder resulting from the dysregulation of pathways that control the sleep and wake states of patients. Although overall knowledge of narcolepsy has increased, no previous studies characterize awareness and perceptions of this condition in the general population or among physicians. Our survey evaluated the understanding and perceptions of narcolepsy among individuals from the general population and from a sample of physicians, including sleep specialists. The Awareness and Knowledge of Narcolepsy (AWAKEN) survey included a sample of 1000 US adults, 300 primary care physicians (PCPs), and 100 sleep medicine specialists (36% board certified) and was conducted online by Harris Interactive in May 2012. Descriptive analysis was performed using 2-tailed t tests with a significance of P < 0.05. Although 70% of the general public respondents had heard of narcolepsy, it ranked lowest in awareness relative to other chronic diseases requiring long-term treatment. Overall, 62% of sleep specialists and 24% of PCPs considered themselves “very” or “extremely” knowledgeable about narcolepsy; however, only 42% and 9% of sleep specialists and PCPs, respectively, felt “very” or “extremely” comfortable diagnosing the disorder. Only 22% of sleep specialists and 7% of PCPs identified all 5 key narcolepsy symptoms; no participant in the general population could identify all 5 symptoms. Sixty-three percent of sleep specialists and 39% of PCPs recognized both of the most prominent narcolepsy symptoms, which are excessive daytime sleepiness and cataplexy. Substantial gaps exist in understanding narcolepsy and its symptoms, even among sleep medicine specialists. Our findings suggest a need for educational initiatives for physicians to improve recognition of narcolepsy symptoms.
PMID: 24393754 [PubMed - indexed for MEDLINE]

That is really sad, Nel. What can we do about that? We need some ideas for raising awareness.

I obviously don’t know the answer Dancermom but yesterday I was watching videos intended for the medical profession on the subject of narcolepsy and was shocked to hear that the average time a patient waits for a diagnosis is somewhere between 10 and 15 years. They said there are huge difficulties involved with diagnosing narcolepsy as symptoms overlap with other disorders (primarily the symptom of excessive daytime sleepiness), comorbidities, and variations in patient descriptions of symptoms. Patients initially present with symptoms of weariness and may not develop other more obvious symptoms for many years. This sends the doctor down a quite different path. Patients can be depressed which also sends the medics down the wrong route, and there are many comorbidities associated with narcolepsy which confuse the issue and then there are medications which, as I know from personal experience, mimic some of the symptoms and they can be blamed too. Not surprisingly, if the doctor is concentrating on fatigue or depression, the people surrounding the patient will also believe that all they need is to get more sleep and buck their ideas up. It seems too that people hide their narcolepsy and it isn’t that much talked about.

There are some very good narcolepsy websites and people like Julie Flygare raise awareness on almost a weekly basis with blogs and videos so I can only think that the failure of many primary care doctors to think outside the box and consider narcolepsy is the biggest stumbling block.

I hope that all makes sense. I am a learner here :L: