He was ambushed due to leg pain without warning


Seeking relief, a fashion executive despairs at the lack of an explanation.

Hours before moving on with her life, Megan Friedman had attended a memorable business dinner surrounded by cherished colleagues at a trendy restaurant in Santa Monica, California, overlooking the Pacific Ocean.

“What we had most fun with was meeting our designers and shoppers from national retailers in Los Angeles in October 2019,” recalled Friedman, owner of a New York City fashion showroom. A wall outside the restaurant after dinner But sitting down, Friedman was talking as she and her friends waited for their cars. When she stood up, her left leg suddenly sprained and she collapsed. “I wasn’t drunk,” she said. The bus sank and someone had to lift me.”

The next morning, Friedman awoke to find a stabbing wound in his partially numb leg. “I was 100 percent sure I had a herniated disc,” she recalled. Friedman had spent the past few days “picking up and schlepping a ton of boxes” heavy suitcases with clothing samples in meetings. A few years ago, two herniated discs in his neck caused similar pain in his left arm.

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

Friedman will spend the next eight weeks bouncing between doctors’ offices and emergency rooms in Los Angeles and Manhattan in what he described as “ridiculous” pain. His leg was often so weak that he had to hoist it with his hands.

In December 2019, hours before he was discharged from a New York hospital after a nine-day stay, Friedman learned that he had a serious illness that had developed without warning.

“I come from a family full of heart disease and cancer,” Friedman, 54, said. “I never expected that.”

crying on the plane

Worried about the intensity of her pain and difficulty walking, a friend with whom Friedman was living took her to the emergency room of the teaching hospital in Los Angeles. Doctors there also suspected sciatica and gave her the narcotic pain reliever Dilaudid. If she did not recover in three days, they advised that she should return.

Friedman did not recover and fell several times. She returned to the ER and had an MRI scan of her lower spine, which found nothing. Doctors prescribed a strong opioid, which she said barely touched the pain. Two days later she went back to New York. “I was sitting there crying on the plane,” Friedman recalled.

She consulted a Manhattan orthopedist she had seen for her neck. He reviewed the MRI and took X-rays. Unable to determine what might be wrong, he referred Friedman to a spine specialist. The specialist was perplexed, as was another spinal surgeon. The latter gave him two epidural steroid injections in his lower back; When neither pain subsided, she advised that she see a neurologist.

Friedman remembers feeling a creeping sense of desperation about his unbearable pain and absence of explanation.

The neurologist ordered an electromyography test and a nerve conduction study to check the functioning of the nerves and muscles in Friedman’s leg. The results showed that the pain was emanating from the front of her pelvis, not her spine. Concerned that she might have a blood clot or peripheral artery disease, in which veins are narrowed due to a buildup of plaque that restricts blood flow, she ordered an ultrasound of her left leg, along with a CTA, a scan. Which inspects the blood vessels for abnormalities.

On Sunday morning, several days before the test was scheduled, Friedman headed to the ER of the Manhattan Teaching Hospital with which the neurologist is affiliated.

“I couldn’t bear the pain anymore,” she recalled. After waiting several hours she was taken to an examination room where she said a young doctor told her the ER staff had “big fish to fry” and recommended she go home. Friedman isn’t sure what prompted his comments, but he said he thinks he has sciatica and needs to rest.

humiliating encounter

“That was the worst moment,” she said, weeping over the memory. “That being told there’s really nothing wrong with you and you should go home. I felt so humiliated.”

Soon after, Friedman went to the ER at Mount Sinai Teaching Hospital, where she had been seeing a neurologist for several years to treat chronic migraines.

The reception was different. Doctors recruiting him and teams from various specialties—oncology, neurology, endocrinology, and rheumatology—began ordering tests in an attempt to find out what was wrong with Friedman, who gained a nickname: “Woman with weird legs.”

Initially, doctors zeroed in on a mass on her ovaries described as “concerning”; It was eventually considered benign. A “highly suspicious” thyroid nodule was similarly ruled out. Doctors noted that Friedman’s leg strength improved after a course of steroids and she was able to walk, although her pain was persistent and severe. sciatica was again ruled out; The scans showed only mild spinal degeneration.

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

Doctors suspected that her history of thyroid dysfunction and her improvement on steroids suggested an autoimmune disease in which the body mistakenly attacks itself; They began to narrow down the possibilities. A positive blood test for PR3, which detects antineutrophil cytoplasmic antibody (ANCA), a protein that mistakenly attacks healthy white blood cells, greatly narrows the options.

On the day of Friedman’s discharge, a team of rheumatologists came to her room to reveal that 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 occur suddenly or develop over weeks or months. The severity and symptoms vary depending on which organ is involved. Treatment involves high doses of corticosteroids, usually along with other potent drugs to calm the immune system. If treated early, full recovery is possible; Without treatment, GPA can be fatal.

An ‘unusual presentation’

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

In Friedman’s case, the disease attacked his femoral nerve. “It was a somewhat unusual presentation,” said Weiwei (Wendy) Chi, a Mount Sinai rheumatologist who has treated Friedman shortly after diagnosis. Friedman also had a history of sinusitis and nose bleeds, which may have been early signs of GPA. can.

She immediately began taking high doses of steroids, which improved her leg function but did little to ease the pain; The damage to his femoral nerve is probably permanent. None of the drugs typically used to treat his pain have worked, Chee said, so “he’s currently on opium.”

“The most confusing part of her case is the constant pain,” which is severe and not short-lived, observed Chi. “I hate giving people old opioids, but we’ve tried a lot and none of it has really helped.”

The 2 1/2 years since Friedman’s diagnosis have been tough. She was hospitalized several times for acute pancreatitis, a severe and painful inflammation of the pancreas often caused by gallstones. He contracted the coronavirus from his hospital roommate during a stay. In May 2021, Friedman underwent surgery to remove his gallbladder.

His 20-year business collapsed as a result of the pandemic. Friedman said it was forced to close its showroom and lay off five of its employees; She now works from home.

Because his life depends on a regimen of drugs that suppress the immune system, the coronavirus becomes an increased risk. She had virtually no protection from the first two doses of the vaccine because her body had not made antibodies.

As the Omicron wave swept through New York City in late 2021, Friedman decided she couldn’t afford to be there with her family, including a son in high school. She returned to New York two months ago to visit her brother in a small town in the Coachella Valley of California. (He got COVID-19 in January anyway.)

In California, she received injections of Evusheld, an experimental drug approved for immunocompromised people. Doctors hope that after returning to New York, he developed antibodies after a single dose of a different coronavirus vaccine administered in April.

He was in good health before the GPA. “This disease is frightening and has really kicked my butt,” she said. “Many people don’t know much about it, and many people who have it are very serious cases.”

Friedman “has been relatively stable for the past three years,” said Chi, who described the severity of his illness as “in between.” He doesn’t have a fatal disease like kidney failure.”

“In the most severe forms, people can be completely healthy one day and in the ICU the next,” said the rheumatologist. “It’s such an unpredictable disease.”

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