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Medical Mystery: An excruciating pain in the leg was ambushed that hit without warning

Seeking relief, a fashion executive became desperate over the absence of an explanation

(Cam Cottrill for the Washington Post)

In the hours before her life was turned upside down, Megan Freedman had attended a memorable business dinner surrounded by dear colleagues at a trendy restaurant in Santa Monica, California, overlooking the Pacific Ocean.

“We had more fun,” recalled Freedman, the owner of a New York City fashion showroom who was in Los Angeles in October 2019 to meet with her designers and buyers for national retailers. Perched on a wall outside the restaurant after dinner, Freedman was chatting as she and her friends waited for their cars. When she stood up, her left leg suddenly bent and she fell. “I wasn’t drunk,” she said she. “I just went crazy and someone had to pick me up.”

The next morning, Freedman woke up with excruciating pain in his partially numb leg. “I was 100% sure I had a slipped disc,” she recalled. Freedman had spent the previous days “lifting a bunch of boxes and loading” heavy suitcases full of clothing samples at meetings. A few years earlier she had experienced similar pain in her left arm caused by two slipped discs in her neck.

“I thought I had sciatica,” he said, referring to the pain that radiates down the leg and is often caused by a bone spur or disc pressing on the sciatic nerve.

Freedman would spend the next eight weeks bouncing between doctors’ offices and emergency rooms in Los Angeles and Manhattan in what he described as “ridiculous” pain. Her leg was often so weak that she had to lift it with her hands.

In December 2019, just hours before his discharge from a New York hospital after a nine-day hospital stay, Freedman learned that he had a serious illness that had apparently developed without warning.

“I come from a family full of heart disease and cancer,” said Freedman, 54. “I would not have ever expected”.

Alarmed by the intensity of her pain and difficulty walking, Freedman’s friend took her to the emergency room of a Los Angeles university hospital. Doctors also suspected her sciatica and gave her the narcotic pain reliever Dilaudid. If she hadn’t been better in three days, they advised her, she would have to come back.

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Freedman did not improve and fell several times. She went back to the emergency room and had an MRI of her lower spine, which found nothing to worry about. The doctors prescribed her a stronger opioid, which she said she barely touched the pain. Two days later she flew back to New York. “I sat there crying on the plane,” Freedman recalled.

He consulted the Manhattan orthopedist he had seen for his neck. She reviewed the MRI and did the X-rays. Unable to determine what might be wrong, she referred Freedman to a spine specialist. The specialist was perplexed, as was a second spine orthopedist. The latter gave her the first of two epidural steroid injections into her lower back; when neither relieved the pain, he advised her to see a neurologist.

Freedman recalls feeling a creeping sense of despair over his incessant pain and lack of an explanation.

The neurologist ordered an electromyography test and a nerve conduction study to check the functioning of the nerves and muscles in Freedman’s leg. The results seemed to indicate that the pain came from the front of the pelvis, not the spine. Concerned that he might have a blood clot or peripheral artery disease, in which the veins narrow due to a buildup of plaque that restricts blood flow, he ordered an ultrasound of his left leg down to the groin along with a CTA, a scan that inspects blood vessels for abnormalities.

One Sunday morning, several days before the tests were scheduled, Freedman headed to the emergency room at the University Hospital in Manhattan with which the neurologist is affiliated.

“I couldn’t take the pain anymore,” he recalled. After waiting several hours she was taken to an infirmary where she said a young doctor told her the emergency room staff had “bigger fish to fry” and advised her to go home. Freedman isn’t sure what prompted her remarks about her, but said he seemed to believe she had sciatica and needed to rest.

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“That was the worst time,” she said, crying at the memory. “I’ve been told there’s really nothing wrong with you and you should just go home. I felt so humiliated ”.

Soon after, Freedman went to the emergency room at Mount Sinai, the university hospital where she went to a neurologist for several years to treat chronic migraines.

The reception was different. Doctors admitted that she and teams of various specialties – oncology, neurology, endocrinology, and rheumatology – began ordering tests in an attempt to figure out what was wrong with Freedman, who had acquired a nickname: “the strange lady of the legs”.

Initially, doctors focused on a mass on her ovary that was described as “troubling”; it was eventually found to be benign. Similarly, a “highly suspected” thyroid nodule was rejected. Doctors noted that Freedman’s leg strength improved after a course of steroids and that he was able to walk, although his pain was persistent and severe. Sciatica was again ruled out; the scans showed only mild spinal degeneration.

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But Freedman’s EMG and nerve conduction studies were abnormal, and an MRI showed inflammation in his left femoral nerve, one of the largest nerves in the leg, which controls movement and senses pain.

Doctors suspected that his history of thyroid dysfunction and his improvement on steroids suggested an autoimmune disease in which the body mistakenly attaches itself; they have started to reduce the chances. A PR3 positive blood test, which detects antineutrophil cytoplasmic antibodies (ANCA), a protein that mistakenly attacks healthy white blood cells, has greatly narrowed the options.

On the day of Freedman’s discharge, a team of rheumatologists rushed to her room to tell her they believed she had granulomatosis with polyangiitis (GPA), formerly known as Wegener’s disease. GPA is a form of vasculitis – inflammation of the blood vessels – that can damage organs. The disease often affects the kidneys, lungs and sinuses.

GPA, which mimics an infection, can come on suddenly or develop over weeks or months. The severity and symptoms differ depending on the organ involved. Treatment includes high doses of corticosteroids, usually along with other powerful drugs to calm the immune system. If treated early, full recovery is possible; without treatment, GPA can be fatal.

An “atypical presentation”

Early in his career in the early 1970s, Anthony S. Fauci, the veteran director of the National Institute of Allergy and Infectious Diseases, and his colleagues outlined the mechanism of the disease, which killed most people at the time. within two years. Fauci also helped devise a 95% effective drug treatment for GPA.

In Freedman’s case, the disease attacked his femoral nerve. “It was a somewhat atypical presentation,” said Weiwei (Wendy) Chi, the Mount Sinai rheumatologist who treated Freedman shortly after her diagnosis. Freedman also had a history of sinusitis and nosebleeds, which may be early signs of GPA.

He immediately started taking high doses of steroids, which improved his leg’s ability to function but did nothing to ease the pain; damage to the femoral nerve is probably permanent. None of the medications typically used to treat her pain have worked, Chi said, so “she’s taking opiates for now.”

“The most confusing part of his case is the persistent pain,” which remains severe and unaffected, Chi noted. “I hate giving people chronic opioids, but we’ve tried so much else and none of it has really helped.”

“I was just scratching myself.” A retired nurse who couldn’t stop scratching she feared she would have to go through an organ transplant.

The two and a half years after Freedman’s diagnosis was difficult. She has been hospitalized multiple times for acute pancreatitis, a severe and painful inflammation of the pancreas often caused by gallstones. She contracted the coronavirus from her hospital roommate during a stay. In May 2021, Freedman underwent surgery to remove his gallbladder.

Its 20-year business has imploded due to the pandemic. Freedman said she was forced to close her she showroom and lay off her five employees; she now she works from home.

Because his life depends on a regimen of drugs that suppress the immune system, the coronavirus poses a greater risk. He received virtually no protection from the first two doses of the vaccine because his body produced no antibodies.

When the omicron wave swept through New York in late 2021, Freedman decided he couldn’t risk living there with his family, which includes a son in high school. She moved to a small town in California’s Coachella Valley near her brother, returning to New York two months ago. (She caught covid-19 in January anyway.)

In California, he received injections of Evusheld, an investigational drug approved for immunocompromised people. Doctors hope she developed antibodies after a dose of a different coronavirus vaccine given in April after her return to New York.

Before the GPA, his health was good. “This disease is scary and it really kicked my butt,” she said. “Not many people know much and many who have it have very severe cases.”

Freedman “has been relatively stable for the past three years,” said Chi, who characterized the severity of her illness as “in the middle. She has no life-threatening organ diseases like rapid kidney failure.

“In the most severe forms, people can be totally healthy one day and in intensive care the next,” added the rheumatologist. “It’s such an unpredictable disease.”

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