Medical Mystery: Immune Disorder Often Misdiagnosed

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More than 50,000 Americans suffer from myositis, a painful, debilitating disorder that results from muscle swelling, but because it is so difficult to diagnose, many don't even know they have it.

Renee Parcover, Lashan Davis-Lanier and Tamara Urbina all had different symptoms and no answers. Each had seen doctor after doctor, but none offered any help.

"I told my husband I wanted to die," Parcover said. "I said, 'If this is how my life is going to be, I don't want to live.' It was so depressing."

Davis-Lanier felt similarly desperate.

"It was very difficult, because I couldn't work," she said. "I couldn't do anything with the baby."

The women had symptoms that could indicate many medical problems and were tough to pinpoint. The mystery was finally solved by Dr. Lisa Christopher-Stine, co-director of the Johns Hopkins Myositis Center, who, after extensive testing, made the correct diagnosis.

Each of these women had myositis, a rare autoimmune disease.

"I showed [Christopher-Stine] a picture of my family, and I said, 'This is the reason you have to make me well,'" Urbina said.

"It is one of those moments in a doctor's life where you really remember why you do what you do," Christopher-Stine said. "And I actually walked out of the room for a moment, told Tami I had to step out, had to compose myself because it was really so striking because that's a lot of responsibility that someone entrusts you with."

Debilitating Pain, but Misdiagnosed

Because the symptoms are so varied and the disease is so rare, myositis is often misdiagnosed

"The story that I hear over and over again is 'I thought something was wrong,' or 'I knew something was wrong and nobody heard me,'" Christopher-Stine said.

The primary symptom of myositis is muscle weakness, normally starting in the shoulders and hips. It can affect the neck and throat muscles, making swallowing and speaking difficult. It can also lead to inflammation of the lungs, causing breathing problems.

The diagnosis is made through several tests -- blood work, a physical exam and a muscle biopsy. In the muscle cells of someone with myositis, immune cells attack muscle tissue.

"The treatments are largely used to suppress or dampen down the inflammation and to stop the immune system [from] attacking itself," Christopher-Stine said. "So there are two forms of medications we use -- anti-inflammation medicines and immunosuppressant medications."

The John Hopkins Myositis Center hopes to come up with more information about the mysterious disease, as well as better treatments. For now, patients are grateful to finally have some answers and start living their lives again.

"You don't know how bad you feel until you feel good again," Parcover said. "It's just that kind of waking up and saying, 'I feel really good today.'"

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