Running into Narcolepsy (Part I)

by julie on February 16, 2010

On July 10th, 2007, I entered my school’s health services with “runners’ knee” and exited with narcolepsy. This is the story of how I literally ran into my diagnosis. (Note to readers: I’ve broken this story up into two parts to keep my blog posts shorter… And to keep you, my patient and loyal readers, begging for more!)

To be clear, we’ll need to rewind exactly one week, to July 3rd, 2007, when I visited health services for the first time. I entered the doctor’s office with three problems I wanted to “take care of” before my second year of law school. First, I felt tired all the time; second, my knees were increasingly giving out on me when I laughed; and third, I had pain under my knees when running.

Oddly enough, I have a photocopy of the doctor’s notes from this July 3rd visit, given to me at some point for referral purposes. I kept this paper and when I rediscovered it years later, I could hardly believe what I read. So first, I’ll let the record speak for itself:

1. “I think I have a sleep disorder,” sleeping all the time, never feels rested. Student notes daytime sleepiness for 1 year. Usually gets 8 hours of uninterrupted sleep. Her boyfriend does not comment on snoring. Especially difficult time driving, any distance.

2. When she’s laughing very hard her knees give out and head is heavy. Knees buckle with laughing.

3. About 15 lbs. weight gain since May 2007 (three months ago). Is quite physically active, plays squash, etc.

I remember this meeting going a lot like this. (I’ll explain later why reading this page surprised me years later.) But for now, I need to add a few memories of my own to compliment the doctor’s notes… The things that didn’t make it into the records…

First, when describing my sleepiness while driving, I used the example of not being able to drive an hour without feeling so tired that I had to pull over to get coffee or walk around to wake up. The doctor responded, “Well, everyone gets sleepy when driving. Even I have to stop to get coffee sometimes.” I remember thinking to myself, “Maybe she’s right, maybe there’s nothing wrong with me.” But then again, something else crossed my mind – the tiniest of inclinations really – telling me that “For some reason, I don’t think this doctor and I are talking about the same kind of sleepiness…” But I couldn’t be sure – I had no way of measuring my sleepiness against hers to determine if mine was normal or not. I only knew what it felt like to be me.

Second, after describing my knees giving out on me when I laughed, the doctor said she’d never heard of anything like that before. I suggested that I thought it might be neurological and she said “Yes, perhaps… I’ll let you go see a neurologist if you really want, but I imagine it’s just some sort of weird disorder you’re just going to have to get used to.” (Not exactly the answer I was looking for, but okay… moving on.)

Third, I brought up my other knee problem – the pain under my knees when running. The doctor set up an appointment for me to see their sports medicine specialist a week later, on July 10th 2007.

Given my daytime sleepiness and my strange unprecedented weight gain (something I hadn’t totally processed until they put me on the scale at health services), the doctor thought something might be wrong with my thyroid. She ordered some tests to check my thyroid and I went on my way – back into the haze of uncertainty.

Now, re-reading this peice of paper, it seems somewhat obvious that I presented a classic case of narcolepsy with cataplexy to this doctor (including the unexplainable weight-gain). However, there are two reasons I don’t blame this individual for not figuring it out. I presented the sleepiness and the knee-buckling laughter as two completely seperate problems. Although I listed them back-to-back, it never occured to me that they had anything to do with one other. I probably would have resisted any suggestion that they were related.

In addition, I do not believe this docotor is a “bad doctor” by any means. In fact, her understanding of narcolepsy (or lack thereof) is actually quite typical in the primary-care community.  I have heard countess similar stories in the narcolepsy world. Although narcolespy effects about 200,000 people in America (about 1 in every 2,000) – on average, people with narcolepsy report experiencing symptoms for 3 to 5 years before receiving an accurate diagnosis.

There are a host of reasons why a disorder of this prevelence passes under the radar, which I will not get into on this blog. However, this may help put the prevelence of narcolepsy into some context for you: narcolepsy is ten times more prevalent than ALS (Lou Gehrig’s disease), half as prevalent as multiple sclerosis, five times more common than cystic fibrosis, and about one quarter as prevalent as Parkinson’s disease. (If you’d like more information or sources for this info, I’ve written a concise essay on this topic that I’d be happy to share with you if you email me.)

Regardless, this pattern of delayed diagnosis is a huge part of why I’m raising awareness and running this marathon. In the time between the onset of symptoms and diagnosis, people with narcolepsy may suffer huge personal or professional consequences – lose their jobs or get into life-threatening predicaments.

Coming later this week — Part II of the story. Check back to find out how my runners’ knee turned into an accurate diagnosis of narcolepsy with cataplexy! (To read Part II, click here)

{ 7 comments… read them below or add one }

~D'Lorah~' February 16, 2010 at 11:38 pm

excellent post…i look forward to reading part II

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virtualjustin February 17, 2010 at 11:05 am

I must admit that I have learned more about narcolepsy through reading your REM Runner account than I ever thought I would. I am interested in reading Part II!

lol @ "Her boyfriend does not comment on snoring."

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tflygare February 17, 2010 at 4:46 pm

Great blog today. Funny how everyone believes they get really sleepy when driving. I heard a doctor at the Narcolepsy Network conference say that a person without narcolepsy would have to be awake for at least 48 hours to experience the same level of sleepiness faced everyday by a person with narcolepsy.

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Ellie February 18, 2010 at 10:39 am

It is a shame that more doctors don't know more about Narcolepsy, and especially about cataplexy and that narcoleptics dream when they take naps during the day. Things have gotten much better though in the US: when I was diagnosed 17 years ago, hardly anyone in the general public knew about Narcolepsy. Now most people have at least heard of it, although unfortunately many only know what they have seen in movies.
I would have expected that your doctor would have recommended that you see a neurologist,though, after ruling out the normal things like mono, lyme disease, etc.
also, at least from what I have seen, the average time between onset of symptoms and diagnosis for narcoleptics is on average actually 14 years (!). which is unacceptable.
Ellie from nisfornarcolepsy.com

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Melissa February 21, 2010 at 2:45 pm

At least the doctor got one thing correct in her notes "Is quite physically attractive"!!! Ha, ha!

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Reid Schmit April 21, 2013 at 7:20 pm

I have narcolepsy as well. This blog is amazing and very helpful in my pursuit to control narcolepsy. Everything this blog is and stands for is very inspirational. In this Part I post you say, “I’ve written a concise essay on this topic that I’d be happy to share with you if you email me.” Well needless to say i would very much appreciate your essay. I am always trying to gain knowledge on the subject of narcolepsy. I am a runner too and similar to you I have been diagnosed with, as my friends and i call it, the Narc. Thank you for all that you are doing.

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julie April 22, 2013 at 1:04 pm

Hi Reid,
I’m so sorry to hear you’ve been diagnosed with narcolepsy too – but I’m so glad you found my site. Good for you for always looking to learn more about living well with narcolepsy. Keep running!
Cheers,
Julie

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