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January 3, 2022

How an art gallery director diagnosed this man's mystery illness

Daily Briefing
    Editor's note: This popular story from the Daily Briefing's archives was republished on Jun. 23, 2022.

    When a 66-year-old man started experiencing "an octopus of pain wrapped around the right side of his skull," doctors offered multiple diagnoses—but nothing seemed to fit. Then, an unlikely source—an art gallery director—suggested he may have a rare autoimmune disease, Lisa Sanders writes for New York Times Magazine.

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    'An octopus of pain' was wrapped around his skull

    One night, a headache with an intense squeezing pressure woke the patient up from a dead sleep—and the same thing kept happening every night for three weeks. The areas around his head and face where the pressure was the most intense were so tender that he couldn't even brush his hair on the right side of his head.

    A few days later, he began experiencing pain in his jaw when he opened and closed his mouth, and the pain was especially bad when chewing. The patient sought help from a dentist, who discovered that tenderness was only in the joint where his jaw attached to his skull, concluding that the man's symptoms were most likely from a common disorder called temporomandibular joint dysfunction (TMJ). But another dentist "wasn't sure what it was," and neither the patient or his wife felt TMJ was an accurate diagnosis.

    Over the following week, the patient suffered headaches every night and began experiencing episodes of double vision. In addition, he lost almost 10 pounds because the pain prevented him from eating.

    Then, as he was swimming laps at his community pool, the patient turned his head to take a breath, and suddenly "an octopus of pain wrapped around the right side of his skull, starting at the joint where the jaw connects and slamming across his face and head with tentacles of squeezing agony," Sanders writes.

    When the pain struck him, he was paralyzed with pain and fear—he could hardly breathe, and he could barely move. After his wife helped him out of the pool, she told him, "We're going to go to urgent care."

    A diagnosis from an unlikely source

    After the man was admitted to the MidHudson Regional Hospital, his wife received an unrelated text from Sarah Cope, the director of her art gallery. "How's your day off?"

    In her response to Cope, the patient's wife detailed her husband's symptoms and the events that led the visit to MidHudson's ED. Cope responded with an interesting question: "Does his scalp hurt?" She asked. "There is something called giant cell arteritis [(GCA)]—an inflammation of the arteries in your brain. Same symptoms."

    Neither the patient nor his wife had ever heard of the rare autoimmune disease that causes inflammation and pain in the blood vessels of the face and brain—but a quick Google search confirmed that it seemed to account for all her husband's symptoms, Sanders writes.

    After a short examination, Danielle Belser, the emergency-medicine doctor on duty, told the couple that the man might have trigeminal neuralgia, which is caused by an injury to the trigeminal nerve that results in terrible pain.

    However, the man's wife quickly explained that they were very familiar with the condition because she had it just a few years earlier. And while it was awful and painful, she was certain that her husband didn't have it, Sanders writes.

    "I know you're going to hate this," his wife told Belser, "but we have a different idea about what it might be: giant cell arteritis."

    Belser smiled. "That was the very next thing on my list," she said.

    Confirming an amateur's theory

    Belser ordered blood tests to determine if there were any signs of the significant inflammation caused by GCA as well as a biopsy of his temporal artery.

    When the blood tests came back positive, the man was immediately prescribed prednisone—a steroid he would be on for months, if not years.

    After his first few doses of prednisone, his headaches disappeared, and by the end of the week, he was able to eat again. His biopsy then confirmed what they already knew: He had GCA.

    Ever since, the man has been on a high dose of prednisone. While his rheumatologist has been slowly lowering his dose, no one can say for sure how long he'll need to be on it.

    As for her part, as someone who has always prided herself on her research skills, Cope is thrilled that she got the man's diagnosis right. "I'm 35. That means I know how to use a card catalog. But I can also use a computer to get the right answer." (Sanders, New York Times Magazine, 12/15)

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