March 28, 2024

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What medical mysteries can teach us about getting better health care

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Who doesn’t love a good mystery?

For 15 years, medical reporter Sandra G. Boodman has chased down the most unusual, quirkiest and weirdest medical cases for her monthly Medical Mysteries series. Recent stories have focused on a teenager who couldn’t wake up, a woman wrongly diagnosed with ALS, and an entire family and guest felled by a strange flu-like illness.

I checked in with Sandra to find out more about how she writes the column and the lessons we can learn from it.

Here’s our edited conversation.

Q. How do you choose your ideas?

A: It has to be something I haven’t written about. It has to be a solved case. I need to know the ultimate diagnosis. Even though it’s a solved case, there has to be a mystery. And there has to be a human story.

Q. Once you pick a case, how do you report it?

A: I ask for a chronology of events and medical records that confirm the diagnosis. The medical records and chronology enable me to see whether, indeed, this is a mystery, whether it unfolded in an interesting way. Will this be an interesting case?

Then, I interview the patient, sometimes the parent, sometimes the spouse. The last step is to talk to the doctor who made the diagnosis or the current treating physicians. Any step along the way, the process can fail.

Q. Do you write about unsolved cases?

A. No, it has to be a solved case. A lot of people write to me and say, “I have this problem, can you help me?” Unfortunately, that’s not what I do. I did once write about a lawyer in Detroit who had gone to the undiagnosed-disease program at the National Institutes of Health. He’s seen more than 100 doctors and still doesn’t have an answer. But I thought his case was so unusual and interesting, I did make an exception that time.

Q. What are some of your most memorable medical mysteries?

A: I wrote about a family that kept getting recurrent strep throat. They couldn’t figure it out. An enterprising veterinarian got involved. It turned out their cat may have been the vector. When they finally treated the cat, nobody has had strep.

One of the weirder ones — there was a woman who had serious kidney and heart problems. It turned out she was eating too much licorice. That was really odd.

And I still vividly remember a State Department worker who had terrible itching on her head at night. She had even been worked up for a type of cancer. She had seen multiple dermatologists. It turned out she had head lice for an entire year. How did they miss that? That was really stunning.

Q. What have you learned about the medical system from writing about medical mysteries?

A. Medical care has become increasingly specialized. Doctors are familiar with a small slice of what’s going on, yet diagnosis is an inherently complex process. I also think time pressures are worsening. It’s like: “You’ve got 10 minutes. Go.” That’s not going to work with a complicated problem.

I also think sometimes patients are not good at describing the problems. The people who tend to do better are organized and can describe their symptoms in a way that is intelligible for a doctor.

Q. What’s your best advice to patients for getting better medical care?

A. Primary-care doctors can really help a patient. I often see people who go right to specialists. They may not have a primary-care doctor, or they use urgent care when they’re sick. That can be problematic. People really undervalue the role of a good primary-care doctor.

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The 2022 Well+Being Gift Guide

Need a gift idea? The Well+Being team shared our favorite finds for cooking, exercising, spending time at home, improving our mental health, presents for your pets and more.

Some gifts are practical and affordable; others are definite splurges. I just bought air fryers for my family members because our Eating Lab columnist Anahad O’Connor recommended it. Runners will appreciate the perfect running shorts recommended by fitness writer Kelyn Soong. Amanda Morris, who writes about disability, suggested hearing-aid jewelry. Reporter Teddy Amenabar has found the perfect traveling coffee mug.

There are lots to choose from, and every item brought us closer to living healthy, fulfilled lives. We hope they do the same for you and your loved ones this year.

Please let us know how we are doing. Email me at [email protected].