The Mystery of Misdiagnoses: Where Have we Heard this Before?

Happy February 2nd, readers. That’s right, it’s–GROUNDHOG DAY! And in honor of the hilarious Bill Murray flick of the same name, this post concerns a brand of deja vu that I’m sure most of us wish the medical community could get rid of: misdiagnoses, especially in terms of disabilities.

One of my favorite television shows is Mystery Diagnosis. Ironic, since I would generally rather have six teeth drilled in one day than set foot in a hospital or doctor’s office for anything beyond a routine physical. But I got hooked on the show a few years ago. I cared about the real people searching for answers, whom the medical community sometimes gave the shaft. I wanted to know where their mysterious symptoms came from. And it comforted me to know that for the most part, post-medical trials, these people were okay. But the actions of real-life physicians on this show regularly disturb me. I realize they often deal with very rare diseases, and that their patients’ “bizarre” symptoms often occur “for some unknown reason” (I’m quoting directly from MD here). Yet, these “known reasons,” if you will, seem weak at times. Let’s pull out a couple of examples, from the show and other sources.

My favorite episode (well, half-episode if you consider each 60-minute show has two stories), of MD is titled “The Boy who Only Hopped.” It concerns Sammy Maloney, who is a gifted math and science whiz. But when he was twelve years old, Sammy began having strange symptoms. His mother Beth describes most of them: “He had to have the lights on 24-7. He would not sleep in his bed. He stopped walking entirely; all he did was hop.” She also describes Sammy as having “complex motor tics” involving grunting, jumping, huffing, and gasping for breath, as well as holding his ears. He combined making spitting sounds with repetitive phrases–“Nothing is nothing is nothing…” At the pinnacle of this, Beth says, her son stopped combing his hair, brushing his teeth, or changing his clothes. Something as small as little yellow stripes on a formerly loved tartan blanket were now bad.

Now, I admit: I’m not a doctor, and I’m guessing most of you aren’t, either, so at first, this sounds like a textbook psychological issue. In fact, Sammy’s psychologist and psychiatrist diagnosed him with both OCD and Tourette’s. Pretty normal response, right? But here’s what gets me: Beth was constantly reassured “not to worry,” as long as Sammy’s symptoms weren’t “interfering with the home” (well, WHAT, exactly, did the pros think they were doing to the home?) This attitude persisted even after Sammy ran away in a stretch of dangerous woods, neglected hygiene, and would no longer sleep. I don’t know about you guys, but were I any sort of physician, physical or mental, I’d get concerned a lot sooner!

One doctor, Catherine Nicolaedes, eventually diagnosed Sammy with PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Yes, strep throat. As in: all this, because of a strep infection. Sammy was asymptomatic for strep in terms of a sore throat, but strep antibodies attacked his brain. As Beth said, had it crossed anyone’s mind that Sammy could have an infection, the issue could’ve been resolved much sooner. Dr. N explains that PANDAS is still a relatively new diagnosis, but still, I wonder why “infection” never entered anyone’s field of thought until that point. And I have known of one other PANDAS case–a little girl in my church experienced unexplainable panic attacks until diagnosed with the same condition.

Speaking of panic attacks, let’s move on. I love children’s and adolescent literature, and read it whenever I have a chance. I was recently assigned to investigate a fiction book on a certain disability for a graduate class. I chose OCD, and Terry Spencer Hesser’s Kissing Doorknobs. The book’s protagonist, Tara Sullivan, is a smart, happy, “normal” girl, until she begins to fear stepping on cracks, because the thought enters her mind that she really could break her mother’s back. And it doesn’t end there. Tara suddenly crosses herself and prays compulsively, especially whenever someone swears. She counts random things, like slats in blinds. She has to arrange her food before eating it, and experiences a need for symmetry–tapping her left foot means tapping her right, also. And yes, eventually, she begins kissing her front doorknob before going out.

At this point, most of you are going, “What’s the mystery–textbook OCD, right?” Yeah. Readers know that. But Tara’s parents don’t. In fact, her mother threatens to kill her for doing OCD rituals, or slaps her when she kisses the doorknob. Her father asks if she can’t “just stop it, for once,” and her friends distance themselves from her. But it’s the doctors who get to me. Throughout the novel (ironically, copyright 1998), they diagnose Tara with:

-Attention-deficit disorder/immaturity

-Self-esteem issues and insecurity

-Borderline anorexia

None of these physicians, including mental health ones, ever probe into Tara’s behaviors and what causes them. It takes a family friend, a science teacher, to do that. And while I’m all for that kind of help, I must ask: Are you kidding me, here? I could understand missing PANDAS, but OCD isn’t that rare, is it? For crying out loud, a whole show with a protagonist who had OCD ran for eight stinking seasons.

And yet, the misdiagnoses go on–every year, every month, every week, every day.

What about you? Was your disability misdiagnosed? Were you ignored? How about your parents? Feel free to write in and share your stories.

As for the medical community: I understand what you guys deal with every day. But please, for everyone’s sake, put the magnifying glass to use a little more. Thank you. 🙂

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