PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Hello world!  Welcome to my recovery blog.

I’m a teenager that has Narcolepsy with Cataplexy, OCD, and another undiagnosed illness that is suspected to be PANS (Pediatric Acute Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus).

I’m writing this blog to raise awareness for my conditions and hopefully, to inspire others to not give up.  There may or may not be a cure for my illness, but I’m on a journey to take back my life, and this blog is for recording that journey.

Once upon a time, I was completely healthy and fit.  But in the summer of 2006, I came down with a mystery illness that tore apart everything I knew. 

My family and I knew something was wrong, but every test the doctors ran looked normal.  Doctors either insisted I was simply “depressed” or that I had a lingering virus or cold. It would clear up in time, they said. But eight years later, I’m still sick.

Just when I thought it couldn’t get any worse, it did, starting last fall. No matter how much I slept, I couldn’t stay awake.  I went to all my classes, but I fell asleep within minutes—even if I was standing up.  I tried double shots of espresso, and I could stay awake for an additional five minutes in class.

I tried to tell myself that everyone was sleepy at my age, but when I had five minor car accidents in one month after no history of accidents, I knew something was wrong.  Last month, I finally got diagnosed with Narcolepsy with Cataplexy.

Narcolepsy is a rare neurological disorder with no cure.  It’s caused by the body attacking the brain chemicals that regulate the sleep-wake cycle.  If you’ve gone without sleep for four days and then gotten a little inebriated at the end of it, you might be beginning to be able to imagine how incapacitating Narcolepsy can be—when 100% sober and after having a reasonable amount of sleep at night.

And then there’s the cataplexy, which is a temporary loss of muscle tone that’s triggered by strong emotions like laughter or anger.  For me, sometimes I don’t even need a trigger.  I’ll just be walking around, when suddenly my legs give out and I fall to the ground.

My life is a challenge, but I won’t give up.  My body may have destroyed certain brain chemicals, but I refuse to let this illness destroy anything else.  My rare diseases have taught me that I cannot control many things in life, but surely I can control what I do in response to it all.

I have no idea how long it will take me to feel better.  I’ll probably never feel better without medication.  Living with a mystery illness is very frightening at times, because there’s no way to know what it might do to me eventually.  But I’m going to run on, in spite of what has happened to me…

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Comments on: "My 8 Year Journey Into the Wormhole of Rare Diseases" (1)

  1. […] years ago today, I published my first post on this […]

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