It’s a condition that causes the body’s immune system to turn against its own muscles, making it difficult to walk or lift heavy things. Inclusion-body myositis is often misdiagnosed or dismissed as a normal part of aging.
From the time he was a teen, Kevin Dooley, MD, was drawn to the mountains.
“It’s been the focus of almost all of my vacations during my life.” Kevin said.
But recently, steep climbs became difficult. At first, he thought it was normal aging until his hands lost strength.
He explained, “When I go to pump gas sometimes I would have to use two hands on the lever to squeeze hard enough.”
When his doctor couldn’t tell him what was wrong, this Harvard-educated ophthalmologist did his own research online. He didn’t like what he found. A specialist confirmed he had inclusion-body myositis, also called IBM.
“No, I’d never heard of it. Even though I’m a doctor it was totally unknown to me,” he admitted.
Thomas Lloyd, MD, PhD, is co-director of the Johns Hopkins Myositis Center at Johns Hopkins University School of Medicine, Department of Neurology and Neuroscience. With IBM, muscles in the thighs and forearms degenerate. About half of all patients have severe difficulty swallowing.
“They either will not be able to eat and take in adequate nutrition, or oftentimes, even aspirate,” Dr. Lloyd explained.
Doctors don’t know what causes IBM. There’s no cure. But Dr. Lloyd says researchers are testing promising therapies that target the muscles.
“On the one hand, stimulating regeneration, and on the other hand, drugs designed to actually slow muscle breakdown,” explained Dr. Lloyd.
Kevin said he’s thankful this condition progresses very slowly. For now, he’s still able to enjoy the outdoors, and hike on even ground.
“It’s great cause I can still do something I love,” he said.
Dr. Lloyd says IBM is sometimes misdiagnosed as the neurodegenerative disease ALS, also known as “Lou Gehrig’s Disease.” But in ALS, the disease attacks the brain and spinal cord, while IBM attacks the muscle.