Misdiagnosis, Zebra Retreat, and Four Things Patients Can Do To Prevent It

Zebra Retreat.

No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And it is not a Starbucks Frappuccino flavor (although I would imagine it with hints of banana and coconut).

Zebra Retreat occurs when a rare diagnosis, or zebra, figures prominently, but the physician retreats for various reasons – perceived inertia in the system, barriers to obtaining special or costly tests, self-consciousness, or even under-confidence about entertaining a remote and unusual diagnosis (Source: Pat Croskerry, Dalhousie University).

Featured in a recent article (Landro, The Biggest Mistake Doctors Make) in The Wall Street Journal, the term ‘Zebra Retreat’ appears among a list of 13 concepts titled “The ABCs of Misdiagnosis”. What frustrated me the most upon reading this (ok, what enraged me the most), is the fact that this not only occurred in my case, but actually occurs enough that people have named the problem.

In March 2012, I was seen by a neurologist recommended by some friends. He was very good.  What really struck me was his attentiveness and attention to detail. He took the time to listen to my symptoms and formed a timeline of when specific problems began and evolved. He was actually the first physician to put together symptoms that I had written off and had not even mentioned because they occurred much earlier and were seemingly benign. He really knew how to elicit information.

The neurologist ordered some expensive tests and exams after taking this history and coming up with a differential. Among the many blood tests, he also did a lumbar puncture and a few small nerve fiber biopsies.

I remember specifically when he said, “It sounds like you have CIDP which is a rare immune-mediated inflammatory condition that affects the nervous system.” It is somewhat related to Guillain-Barre (with which I was familiar).  He wanted to wait until the tests came back, obviously, to confirm or deny any diagnosis.

I never did get that diagnosis from him.

It would be another 10 months and 2 physicians later until I was diagnosed with CIDP and autoimmune autonomic neuropathy. And it would be 12 months before I would receive any treatment for it.

12 months. 1 year. Of suffering with symptoms of a ‘zebra’ condition that one doctor thought I had one year earlier but for some reason shied away from that diagnosis.

To this day, I’m not sure why he was unwilling to make this diagnosis at the time. Were my symptoms not as pronounced? Had the disease not progressed to that point? Or was it what the WSJ article suggested? That diagnosing a ‘zebra’ scared him due to liability issues?. Self-consciousness? Under-confidence?

So what can we do as patients to lessen the likelihood of this happening to us?

1. Ask questions. Don’t be afraid to question tests and diagnoses.

2. Be relentless. This is our health we are talking about. If something doesn’t seem right, it isn’t. Keep trying or find a different doctor.

3. Get a second opinion. Most (good) doctors encourage second opinions. A physician’s ego should not get in the way of your health.

4. Ask for details. On your condition. Make sure your symptoms align. And again, ask questions if you are confused.

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