Diagnosis eludes for two years

Karima Hijane could not believe what she was hearing: The obstetrician who for two years had insisted that her mystifying constellation of symptoms was the result of stress had discovered the real cause, imparting devastating news that would alter Hijane's plans for her future.

Now this trusted doctor, who had delivered her only child several years earlier, was telling the IT consultant to make an appointment to discuss the results -- in two weeks.

"I think perhaps she was shocked and didn't know what to say," Hijane, 34, speculated. She remembers feeling numb during that March 2007 phone call, then weeping in the privacy of her Northern Virginia office before heading off to client meetings during which, she said, she acted "like a robot."

For more than two years, Hijane had made the rounds of various specialists: an endocrinologist, a rheumatologist, an orthopedic surgeon and several internists. Yet none ordered the blood test that would have revealed the reason for her night sweats, insomnia, light periods and, possibly, her persistent bone pain.

"She's representative of what happens to the patients we see," said research gynecologist Lawrence M. Nelson of the National Institute of Child Health and Human Development.

Six weeks after receiving the life-altering news, Hijane checked into the clinical center at the National Institutes of Health to participate in a long-running study of the disorder, which affects about 1 percent of women younger than 40.

"A lot of the patients we see think they're going crazy," said Nelson, who sees about two new patients per week with the same diagnosis as Hijane's. "It's appropriate for doctors to ask about stress. The mistake is to assume that's what it is."

In Hijane's case, he added, her first symptom, bone pain, was something of a red herring that initially may have led doctors in the wrong direction.

The pain begins

Hijane said her problem began several months after the birth of her son in December 2004. During the pregnancy she developed a complication involving a separation of the pubic bones. Stressing that a second pregnancy would be dangerous before the pubic separation healed, her obstetrician prescribed birth control pills, which Hijane began taking.

Several months later she was bothered by pain in her right hand. Doctors told her it was probably caused by computer use. When it continued, her OB-GYN referred her to an orthopedic surgeon, who found nothing amiss.

Soon the pain began spreading to other parts of her body and was sometimes accompanied by muscle twinges. She began experiencing new problems: intermittent migraines, painful intercourse and light periods. Some nights she would awaken bathed in sweat. Blood tests, X-rays and an MRI revealed nothing.

She was young and healthy, the doctors assured her. She just needed to relax. "After a while," she said, "their reactions made me feel like a whiner, like I was making up all of these bizarre symptoms."

In 2006, after the bone pain continued, the obstetrician sent her to a rheumatologist, who performed a work-up for arthritis. She, too, found nothing.

"She suggested I should work out," Hijane said.

A visit to an ear, nose and throat specialist for the migraines did nothing to relieve the headaches. A few months later Hijane was back in the gynecologist's office, complaining of vaginal dryness and painful intercourse; the doctor treated her for a possible yeast infection.

At one point, Hijane said, her frustrated OB-GYN told her there was nothing more she could do and suggested Hijane gather her records and take them to the Cleveland Clinic or another major medical center.