>Doctor Discretion

>At times I get extremely upset with my medical care and that of narcoleptics in general. While some of that frustration is justified, the reality is that most of my physicians have been outstanding. Honestly, only a handful of doctors in the world have a deep understanding of narcolepsy and its causes. In the last few years, the biggest breakthroughs ever have taken place with the discovery of orexin/hypocretin.

Yet even with all of that, I do think that doctors need to learn more about narcolepsy and other sleep disorders. While narcolepsy seems to only affect 1 person in 2500, there are still a number of undiagnosed narcoleptics out there. Far more unnerving are the many people with sleep apnea who are undiagnosed. The importance of sleep is massive and barely understood. Orexin/hypocretin, which is lacking in narcoleptics, was discovered while researching hunger issues. There also may be connections between narcolepsy and MS, Parkinson’s, sinus issues and ADHD/ADD. The bottom line is that sleep is vital to our mental and physical health, and many people are going undiagnosed and unhelped.

Of course, in many ways, those of us in the U.S. are lucky. A friend in the U.K. wrote a great article for The Guardian. It came out today and details that massive numbers of people in the U.K. are going undiagnosed due to their health systems unwillingness to recognize these conditions. It is sad that so many people are being hurt because of a systemic problem. Of course, one could argue that the U.S. has a similar issue in the way that health insurance companies tend to control what doctors can and cannot do. Still, we don’t seem to have quite the problem that Great Britain does.

I realize that narcolepsy and other sleep conditions are incredibly difficult to diagnose, but so many people are made to feel like hypocondriacs. Because narcolepsy is rare and the primary symptom is Excessive Daytime Sleepiness (a fancy way to say extreme fatigue), most doctors explore a multitude of issues before even considering narcolepsy. Worse, some doctors never explore narcolepsy! Unfortunately, even specialists who are the “experts” in narcolepsy sometimes don’t have much practical experience treating the condition. As a result they (and certainly a vast number of general practicioners) miss some of the signs because they don’t match the “textbook” descriptions of narcolpesy symptoms. And, because we are only now just beginning to understand narcolepsy, the disease is likely far more diverse than anyone suspects.

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