Rock music fan diagnosed with multiple sclerosis at young age

Terri Smith was 15 when she was diagnosed with a neurological disorder.

By TJ Banes, IU Health Senior Journalist, tfender1@iuhealth.org

She is upbeat and eager to share her experiences with others. So much so that Terri Smith serves as a mentor for others diagnosed with multiple sclerosis.

“I have people I talk to on the phone in other states. It’s a way to offer encouragement,” said Smith, 45. “We talk a lot about the mental things you go through when you hear the diagnosis.”

Smith was 15 when she was first diagnosed. That young diagnosis was somewhat of an anomaly, said Smith,

According to the National Institute of Neurological Disorders and Stroke, Multiple Sclerosis (MS), an autoimmune disorder, typically exhibits symptoms in young adults between the ages of 20 and 40. MS affects people differently. Some will have mild symptoms with little disability, while others experience worsening symptoms over time. Those symptoms may include vision problems, muscle weakness, tingling, numbness or pain in the arms, legs, trunk and face, clumsiness, bladder control problems and dizziness. Those diagnosed may also have mental and physical fatigue, mood and cognitive changes. Women are more likely to get MS than men and it is most common in White people.

While MS isn’t an inherited disorder, research suggests having a parent or sibling with MS increases the chance of someone being diagnosed. Smith’s diagnosis was new to her family of six girls and one boy. She is the youngest. Her sister Pattie Smith accompanied her to a recent infusion at IU Health Simon Cancer Center.

Terri Smith’s symptoms began with her eyesight. “I went from 20/20 vision to walking into walls,” she said. “I met with a neurologist and went through a plethora of tests and then a spinal tap to diagnose the MS. At the time I was one of the youngest in the state.”

For years she did an injectable protein therapy used to reduce inflammation and manage relapsing. When her body grew resistant, she began monthly infusions at IU Health Simon Cancer Center. The infusions block harmful immune cells from entering the brain and spinal cord and reduce flare ups.

“Terry’s lucky because she’s had a lot of good neurologists over the years,” said her sister. At IU Health she is in the care of Dr. Jaison Grimes. Pattie lives with her sister in their family’s 1800s home in the historic Chatham Arch neighborhood near downtown. Both parents and their only brother are deceased.

Terri’s face lit up when they shared stories about growing up in a family of seven children.

She shared an interest in rock music – especially the group KISS – with her only brother. Together, they attended concerts and conventions and started a collection of unusual memorabilia. Terri’s other collection includes more than 100 rock band t-shirts.

They speak fondly of their parents.

“Our mother always cooked a big Sunday dinner,” said Pattie. “We had a lot of family unity. We believed in being open and honest.”

When their dad had heart problems and open-heart surgery at IU Health, they remember him quitting his job as a security guard. “If there was an argument, he sat us down and we figured it out. Family meant everything.”

By the time the younger ones were going to school, some of the older siblings had moved out. Pattie, nine years older that Terri, is her closest sibling and has remained by her side since her early diagnosis.

“Going all the way back to when I was a baby I had pains in my legs, and I think we always knew something was wrong, but we didn’t know about MS. Pattie and I talk about it all the time and wonder if that’s when it started,” said Terri. “I think Terri does well with the MS but she has migraines what impact her life. She can’t work and it’s tough to predict when the symptoms will get worse,” added Pattie.

It’s been a life of adjustment for the youngest sister. “I just want to keep listening to music and going to concerts and living the best life I can.”