Questions About Narcolepsy

How do they test for Narcolepsy?
There is no 100% certain test for Narcolepsy. There are several tests, however, to determine how likely you are to develop the condition.

1. A blood test is available to check for the Narcolepsy gene marker. Most people with Narcolepsy carry this marker. However, not all people who carry the marker will develop Narcolepsy, so having the test prior to any development of symptoms is highly unreliable.

2. Often done in research settings, a spinal tap collects cerebral spinal fluid to test for hypocretin cells, those which Narcoleptics are lacking. The lower the levels, the more likely Narcolepsy is the culprit and the more advanced the disease. While accurate, the test is extremely expensive, painful, and carries risks such as permanent paralysis and is therefore not widely recommended as a general diagnostic tool for Narcolepsy.

3. The standard method of diagnosing Narcolepsy is a combination of a thorough medical screening to rule out other potential diagnoses, with an overnight polysomnogram and daytime multiple sleep latency test, otherwise referred to as the PSG and MSLT.
The tests are conducted at a sleep center or hospital, where the patient is connected to several types of monitoring equipment. Although all the wires and leads can look intimidating, the setup is not painful or uncomfortable. The patient will be asked to sleep as normally as possible, and will be monitored throughout the night for movement, blood pressure, breathing patterns, any snoring, oxygen saturation, brain wave patterns, and many other types of data.
The following morning, some of the leads will be removed, but some will remain. Breakfast will be served. Throughout the day, the patient will be required to take short naps at two hour intervals. Between naps, he or she is asked not to sleep. The study is designed to measure how long it takes the patient to fall asleep (if he or she does), and how long after falling asleep, REM occurs. The faster sleep and REM occur, the more likely a diagnosis of Narcolepsy.
It is notable, however, that many patients are diagnosed on medical history without a “classic” sleep study or MSLT results, so it is important not to have expectations or be disappointed if a study does not seem to go the way one expects.
Generally, because of the volume of raw data to be reviewed, it takes several weeks for the results to come in, and a follow up consult will be scheduled to discuss the report with a doctor.

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