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Reporter's notebook: Reflections on practicing medicine on the fringe

By Dr. Sanjay Gupta, CNN Chief Medical Correspondent
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Gupta: Medical unit 'one of a kind'
STORY HIGHLIGHTS
  • Too many patients are told symptoms don't fit into any known pattern
  • Some of greatest progress in medicine has been when we truly explored a mystery
  • Most doctors are not accustomed to failure and avoid it, but NIH elite team embraces it

See how Sally Massagee and her doctors tried to stop muscles from growing all over her body on an "AC360°" special investigation, Thursday at 10 p.m. ET

(CNN) -- A medical school professor once said to me, "Mysteries are not hidden from us, they are hidden for us."

It was my first year of medical school, and I was slugging through gross anatomy, pathology, embryology and immunology. With long hours and little sleep, I was happy to reduce the number of mysteries in my life, and simply learn all the course work.

Over the subsequent years, though, I thought a lot about what he said, and what he was trying to tell me. What is the value of recognizing a mystery, and then going about solving it?

Well, in the world of medicine, it means a great deal. Too many patients are told their symptoms or ailments don't fit into any known pattern or doctors have never seen a patient like this before.

Some of our greatest progress in medicine has been when we truly explored a mystery and tried to make sense of it. While it is easy to write something off as an anomaly or an aberration or "not fitting within the standard deviation," a mystery may in fact teach us something, and perhaps advance the entire field of medicine in the process.

That is the mentality of a special place at the National Institutes of Health, known as the Undiagnosed Diseases Program, or UDP.

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Dr. William Gahl runs the program, and in many ways he is exactly what you would expect. To be clear, he is not Dr. House. Instead, he is a pleasant, professorial type, who doesn't abuse pain pills. But, like House MD, he does have the uncanny ability to see through problems that many other doctors have missed. He misses nothing, and his clinical exam is often better than a room full of diagnostic equipment.

Keep in mind, the patients he sees have often already been seen by the "best" places in the country -- including the Mayo Clinic, Michigan, Stanford, etc.

Elite medical unit is last hope for patients with mystery illnesses

He will be quick to point out that he is not necessarily "smarter" than his academic colleagues, but he does have a few things going for him.

First of all, he gets to lay a fresh set of eyes on a patient, and doesn't succumb to a group-think mentality, which can plague a hospital. That is: After one doctor proposes a diagnosis, other doctors will often second that opinion, after reading it in the chart. Gahl starts with a blank sheet and goes from there.

Second, he is not looking for the obvious things. His job is to make sense of the aberrations or anomalies and pay closer attention to the fringe.

Finally, while most doctors are not accustomed to failure and will do anything to avoid it, Gahl and his team embrace it. They recognize that a failure rate of 85 to 90 percent is the price they pay to treat the rarest of patients and to advance science in the process.

I have wanted to visit this special place, the UDP, for a long time. I now understand the value of a good mystery, and it was a thrill for me to be in the same room as the greatest mystery solvers of all.

All this week on AC360°, we took you behind the curtain to see how these doctors approach problems in a very different way. Thursday night in our final installment, we're going to get some answers from the UDP team about what is happening to Sally Massagee and Kylie McPeak.

Have you ever had a medical problem no one could solve? How did you go about finding an answer?

Watch Anderson Cooper 360° weeknights 8pm ET. For the latest from AC360° click here.