Pros and Cons of the Abundance of Online Health Information: When Knowing Too Much is Just Too Much

Grande_latte04

Remember back in nursing school when our pathophysiology teacher told us all: "At the end of this class, you will all have convinced yourself you have at least one of the diseases we have talked about." It felt like just yesterday that I was sitting in class, so eager to learn about all of the diseases and disorders that could affect the human body. After all, it was my curiosity that drove me to science, medicine and ultimately, nursing. But I wasn't a hypochondriac. If anything, I was the opposite. I was a carefree 23-year-old, levelheaded, rational. My mind would not play tricks on me.

It didn't happen all of a sudden. In fact, I had been a nurse for many years before my first run with health anxiety occurred. A little backstory ... I have always been an athlete. I was a two-sport D1 athlete. Between soccer matches and running 5ks, I was a surfer, rock climber and avid hiker. I was the type of nurse who was in the gym before my night shift. So when I woke up one morning with a sore neck, I figured I would run it out. Well, after many months, the sore neck never got any better. I eventually took my complaints to my primary care provider, who, after a series of x-rays, diagnosed me with shoulder arthritis. I was having some shoulder pain and figured that diagnosis made sense. I went back to my daily life without it really getting better.

Fast forward a few years later, and I gradually start to lose my ability to bring my arms over my head. It didn't happen all at once. But one day, I realized I was having a lot of trouble with overhead motions. But it wasn't until one day at work that I started getting extreme pain and numbness down both arms that I really started to wonder if something was truly wrong. So instead of going to my PCP, I took to the world wide web. I entered a few symptoms: twitching, hand clumsiness, finger stiffness, numbness, and up pops none other than the beginnings of my worst nightmare: Amyotrophic Lateral Sclerosis (ALS).

For those of you who don't know, ALS, also known as motor neuron disease, is a progressive neurodegenerative disorder that exclusively affects the motor neurons of the brain. Signs and symptoms include weakness and loss of function. This is often accompanied by fasciculations, small muscle twitches caused by the misfiring of dying neurons on muscles. This typically begins distally and progresses quickly from muscle to muscle, ultimately leaving an individual paralyzed¹. Death from the disease typically occurs in 2-5 years, although there are cases where people have lived significantly longer; for example, Stephen Hawking lived for over 40 years with a juvenile form of ALS².

So there I sat, terrified that I had somehow contracted ALS, a rare neurological disorder that, while not impossible, rarely affects individuals in my group. The chances of me having this disease were miniscule, especially given that if looked at objectively, I did not truly have ALS-like symptoms. But I was convinced, and I was determined to convince my doctor that I had something seriously wrong.

That night I went to the ED, prepared to face my destiny. At the ED, they were also convinced something was terribly wrong, but ALS was very low on their differential. I had a chest x-ray, blood work, and ultrasound of veins looking for clots. Inside, I was screaming: "I have ALS; you have to look at my muscles. Get me an EMG". Next was a brain C spine MRI. Results came back pretty immediately: bulging and herniated disc at C5/6 causing severe cord compression. The ER doctor called for a neurosurgeon consult, and I had my very first interaction with my soon-to-be surgeon. He gently explained to me that my very inefficient spine (thanks, mom) was pushing on my very delicate cervical spinal cord, causing all the symptoms in my arms, shoulders and hands. I looked at this man: a surgeon who had studied at Harvard, done a surgical residency and a fellowship in minimally invasive spinal surgery, and asked him: "Are you sure I don't have ALS?". The man looked flabbergasted. "Why would you even think that? You have no signs of ALS! I just explained to you that all of your symptoms are clearly caused by your C5/6 disc issue". He next told me my best option was surgery and that he would admit me tonight so that I may have surgery in the morning. I agreed with the one exception that he provide me with a neuro consult prior to surgery. He agreed to appease me.

The next morning I expressed my ALS concerns to a middle-aged neurologist who again looked at me like I had three heads when I mentioned ALS. He said to me, "I see people who have ALS on occasion. I do not believe there is any evidence that you have ALS. Have you seen your scans? They are very suggestive that all of your symptoms are coming from C5/6".

I wanted to believe him. I really did. But at this point, I was so engrossed in ALS literature. I had read so many stories of ALS presented in so many different ways. I was convinced that this could not be anything else. Following surgery, I fixated on ALS for many months. I saw two neurologists, both of whom did EMGs upon my request. I read a story that one individual's first sign of ALS was a positive Babinski. I checked my Babinski seven times a day for three months, convinced that this was how it would all end for me. In the span of a couple of months, I learned the complexities of the EMG, what each value meant and how those values correlated clinically. I drove myself mad with worry as I caught myself in a vicious cycle.

What is crazy is that I was not alone. I joined an ALS forum where 10-20 people a day would come to discuss their potential ALS symptoms. I watched people argue with forum goers about how they just knew they had ALS based on their twitching patterns, their perceived weaknesses, and the slur they heard while pronouncing their "s" or "ch." I joined a facebook group where one gentleman posted a photo of his tongue every day, looking for atrophy. I messaged back and forth with a woman who was sent to a mental institution by her family because she was convinced she was dying. All of these people had one thing in common: they were victims of having too much information. Information that was not always accurate, informed, complete and wise. I, like these people, believed I could play neurologist by googling symptoms and developing my own differential based on anecdotal evidence. This is dangerous, and it is so tragic. I spent six months of my life planning my funeral. And I am clearly not the only one who has been in this situation.

References/Resources

¹Amyotrophic lateral sclerosis

²StephenHawking.org

Pros and Cons of the Abundance of Online Health Information: When Knowing Too Much is Just Too Much

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