Hidden in plain sight

Over 1 million people in the U.S. have multiple sclerosis, a disease as unique as it is elusive.

BY JANE STEINBRECHER

On an ordinary sunny afternoon in 2011, Boone Hospital Center nurse Kim Williams was looking up.

“It was a beautiful, beautiful day; the sky was brilliant blue,” Williams says. “I had just stopped for a moment to appreciate the sky.”

When Williams was gazing at the horizon, an accidental glance at the sun left a colorful afterimage in her vision. She drove home, but after several hours the undulating, orangey-blue spots had not left her sight.

“I woke up the next morning and stared at a white wall in my house,” Williams says. “I said to myself: ‘This is all wrong. It’s still here.’ ”

After a visit to an eye doctor, a CT scan, an MRI and eight weeks of test- ing, neurologists found signs of multiple sclerosis in Williams — specifically, relapsing-remitting MS, a condition in which the typical MS symptoms come and go, but always return.

Multiple sclerosis is a rare neurological disease characterized by the breakdown of the nerves’ protective outer coating, which can lead to limited mobility, damage to or loss of eyesight and a plethora of other symptoms.

In her job as a nurse, Williams had divided her time between University Hospital and Boone Hospital Center’s neonatal intensive care unit. Only two years after diagnosis, Williams stopped practicing.

“I hadn’t realized it, but I was having cognitive changes,” Williams says. “Over time, those worsened, and I wouldn’t be able to continue working. I also had to use

How To Support

Rockin’ Against Multiple Sclerosis a mobility aid. You can’t work on a (hospital) floor like that — you need both hands.”

Diagnosis is difficult

March was Multiple Sclerosis Awareness Month, and according to the MS Institute of Mid-Missouri, over 1 million Americans have multiple sclerosis. Columbia is home to the institute, where expert neurologists at University Hospital try to find new treatments. Coordinator Jamie McDonald takes pride in the institute’s innovation in diagnosis and treatment. “(MS) never goes away,” McDonald says. “We just want to get them from surviving to thriving.”

McDonald refers to MS as the “snowflake disease” because of the unique ways symptoms can manifest in a patient. Often, no two cases of the disease are alike, and the variety in symptoms makes it difficult to obtain a diagnosis.

When Williams first had her eyesight inspected in 2011, she was told to rest and return in two weeks if the spots in her vision did not go away. “Being a nurse and a proactive person in general, I just didn’t accept that,” Williams says.

But Williams’ early diagnosis is not the norm. Some MS patients wait years for a proper diagnosis, as telltale signs of the neurological disease could appear innocuous to an untrained person. Fatigue, weariness, headaches and muscle pain are all key indicators of the onset of MS.

“I’m fortunate in that I was able to get an early diagnosis and start treatment early,” Williams says. “It’s very common for people to struggle for a diagnosis. You’re told, ‘You’re just stressed, you’re having anxiety, or here, take this pill.’ You see doctor after doctor trying to find out what’s wrong. You could wake up one morning and not be able to walk.” MS is not a curable disease. Treatments include medication, symptom management and rehabilitation.

Finding support is key Williams wishes more people understood that MS is an invisible disease. She uses a walking pole, so her symptoms are visible. But for most patients, a passerby could never guess that they have MS. Damage of the brain and spinal cord can manifest in several different ways in the body and almost none of them are visible.

Williams yearns for greater sensitivity and awareness toward MS. Recognition of symptoms leads to faster and more effective treatment. “I just wish people understood more,” Williams says. “Just because someone looks great doesn’t mean everything’s great.”

Williams recommends seeking support immediately after diagnosis. The National Multiple Sclerosis Society is a popular resource among the community for finding local support groups.

“I’ve been very fortunate in my life and (with) my family,” Williams says. “My friends are very understanding and willing to learn. For people who have MS, I just don’t want them to feel alone,” she says.