r/Narcolepsy•
waitwuh

I wish people would stop asking "Do I have Narcolepsy?" here. The internet is no substitute for a medical professional.

I am getting very frustrated with these posts, and here's why:

  1. It's bias. It's a loaded question, first of all. The poster has already singled out the disorder they think they "might" have, and even if subconsciously, they are focusing on symptoms that match up. And it's not like people on this thread are impartial - we're very familiar with narcolepsy and might be inclined to see it in others when it's not really there.

  2. We're not doctors here. Well, some of us might be. But an internet forum is not the place to look for a diagnosis. Symptoms of narcolepsy overlap with those of many other disorders, and sometimes it can be hard to distinguish for even doctors. So why turn to strangers on the internet who aren't medical professionals? Doctors, at least, have gone through med school and are familiar with many, many, disorders. They have at their disposal many different tools to use that we don't. They can explore multiple probable causes and run things from blood tests to sleep tests to rule out other reasons for the symptoms. Lets not forget how valuable that is.

  3. It's dangerous. A person might get validation from the internet that they are narcoleptic, and thus avoid exploring other probable causes for their symptoms. For example, it can be difficult to distinguish hallucinations caused from, say, schizophrenia, from the ones that are caused by narcolepsy. Cataplexy and certain types of seizures might seem similar to people. Sleep disturbances, tiredness, and the like accompany a multitude of disorders. Things from diabetes to mental disorders, from hypothyroidism to ADD can cause similar symptoms of abnormal sleep. It's easy to miss things and misunderstand things. There are things a doctor might think of checking that you wouldn't have. And most importantly, they can run tests that are a lot more conclusive than self-diagnosis. Narcolepsy or not, it's important that people get the proper treatment. It can be very bad if someone misses out on some treatments - from diabetes (which can cause tiredness, hallucinations even, sleep disturbances, ect) to brain tumors, just because some guy on the internet said that it sounded like they had narcolepsy and they believed him without going to a doctor. At the very least, narcolepsy can show up in a sleep test, which can also look for other sleep disorders. So if you think your sleep is messed up, get a sleep test at least.

Questions about insurance, or doctors, or where to get a sleep test done, ect., should be encouraged for those seeking a diagnosis. r/narcolepsy redditors who have gone through such can share invaluable experience and have tips on how to get a sleep test or a doctors visit or medicine without insurance or on minimal insurance, ect.

So please, for the love of proper diagnostics, encourage such posters to seek validation from medical professionals IRL. Not here. I implore r/narcolepsy to not encourage such posts and to instead respond to them by encouraging them to consult a doctor, not feed into their assumptions. Again, it's way too bias here: posters may convince themselves that some symptoms are there that aren't, ect. I understand respondents mean well, but just tell them to see a doctor.

Thanks for reading.

Posted Nov 28, 2013, 10:44 PM UTC

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