Woman Spent Years Believing She Had MS. It Was Rare NMOSD
DeMonica Amerson was told in 2001 she had multiple sclerosis and treated it for nearly 20 years. A 2019 hospital visit led to new tests showing neuromyelitis optica spectrum disorder, a rare autoimmune condition. She now takes a different infusion.
DeMonica Amerson, a woman who spent years believing she had multiple sclerosis (MS), learned after a 2019 hospital visit that she has a rare autoimmune disorder called neuromyelitis optica spectrum disorder (NMOSD). She had been told in 2001 that she had MS.
The misdiagnosis shaped almost two decades of her treatment and her life.
MS is a chronic autoimmune disease of the central nervous system that affects the brain, spinal cord and optic nerves. NMOSD is a rare condition in which the immune system mistakenly attacks the body's own healthy cells.
Amerson had just graduated from college when doctors gave her the MS diagnosis. They first suspected optic neuritis, because her symptoms were in her eyes, and then lupus. A spinal tap led to the MS finding.
"I was mad, I was hurt, I was nervous, confused, all the things," Amerson recalled. No one in her family had the condition.
She began giving herself daily shots. As MS treatment changed over the years, she moved to a monthly infusion and had a port placed in her chest to receive it.
Amerson worked as a school administrator, married and had two daughters. She also advocated and raised money for the MS National Foundation. When relapses came, she said she "just kept going."
The 2019 emergency room visit
In 2019 she became lethargic, her legs went numb, and she went to the hospital. She missed her daughter's birthday party.
In the emergency room she felt pressure in her eyes and began vomiting. An on-call neurologist examined her and ordered a specialized blood test. She was discharged once her condition stabilized.
Days later the neurologist called. He believed she had a rare autoimmune disorder.
Another neurologist referred her to a specialist. Follow-up testing showed she never had MS and instead had NMOSD.
"I had been dealing with this since I was 21 years old, and now, almost 20 years later, here comes something different," Amerson said. She added that she "didn't know there was another disease that mimics MS at all."
She was so angry at the news that she walked out of the doctor's office. Later she reached acceptance. "I was mad. I don't want to say I got over it, but I accepted it," she said.
Amerson now receives an infusion called Uplizna. She said it is "working well" and that she takes her health "day by day." Her message: "I choose not to give up. I choose not to quit. I choose to keep going forward."
