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Seeing the world in gray

March 29, 2017 GMT

LIHUE — When Angie Soto woke up one morning and half of what she saw was grayed out, she knew something was wrong.

“I started to lose sight in my right eye,” Soto said. “At first I thought it was an eyelash, or something because it looked like how things look like when hair falls in front of your eyes. When I woke up and half was grayed out, I said, ‘Whoa! Something is definitely not right.’”

At 27-years-old, Soto was diagnosed with optic neuritis, or an inflamed optic nerve.

“I was sent to a neurologist who admitted me for treatment,” Soto said. “On a subsequent visit to follow up, they asked me if there were any other symptoms. During the treatment, I didn’t think much of it, but I started to get a tingling feeling in my fingers and toes. It was a weird feeling. That was a symptom of multiple sclerosis.”

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The discussion led to Soto getting an MRI and spinal tap where doctors found lesions on her brain.

“This is crazy,” Soto said. “What kind of sickness is this that when you wake up, half your vision is gone?”

Cynthia Edralin, a person living with MS, said the disease affects people in many different ways.

“In Angie’s case, it affected her vision,” Edralin said. “But, she’s still such a sweet person. She walks with us every year at the MS Walk. And her parents walk, too.”

The treatment for Soto’s disease involved injecting herself every other day. This was probably the hardest thing she had to cope with.

“It was painful,” Soto said. “Injecting every other day resulted in skin atrophy, or more simply, running out of places to inject. It was painful, and it was one of the hard reminders that something was going on with me. There are some days when you feel perfectly fine, but there was something going on, inside.”

At the time she was diagnosed, Soto worked at the Aunty Lilikoi’s facility in Waimea.

“There were some days I felt really tired,” she said. “Despite getting a good’s night sleep, I was tired and felt like I was hit by a Mack truck. My vision never really came back. It was okay if I looked at things on a monitor screen. MS affected my depth perception and for the first six months, or even a year, I wouldn’t drive at night. Now, I’ve adjusted and can drive with no problem.”

The hardest thing about being diagnosed with MS is trying to keep busy, she said after living with MS for the past six years.

“MS spurred me on to change my career,” she said. “It made me go back to school and earn my Master’s degree in Information Technology, and this job at Kukui IT. I haven’t had any relapses, and the main thing is for me to stay active — live a healthy life for as long as I’m able to.”

Edralin said Soto will be walking at the MS Sunset Stroll when the activities start at 4:30 p.m. at the Kapaa Beach Park on April 15.

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