A woman spent years believing she had multiple sclerosis because of a misdiagnosis. She actually suffered from a rare autoimmune disease

NEED TO KNOW

  • Woman spent years believing she had multiple sclerosis (MS) due to misdiagnosis

  • DeMonica Amerson actually suffered from neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease

  • “I was angry. I don’t want to say I got over it, but I accepted it,” Amerson said.

A woman with a rare autoimmune disease spent years believing she really had multiple sclerosis (MS).

DeMonica Amerson was diagnosed with MS in 2001, according to CBS News. According to the Mayo Clinic, MS is a chronic autoimmune disease of the central nervous system that affects the brain, spinal cord and optic nerves.

“I was angry, I was hurt, I was nervous, confused, all of that,” Amerson recalled to the outlet, describing the emotions she felt when she was diagnosed with MS, even though no one in her family had the disease.

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CBS News reported that doctors first thought Amerson had optic neuritis, based on his eye symptoms, and then lupus. He was eventually diagnosed with MS following a lumbar puncture.

Amerson, who had just graduated from college when she was diagnosed with MS, began giving herself daily injections to treat her illness.

A doctor's office (stock image).Credit: Getty

A medical office (archive image).
Credit: Getty

In the years that followed, as treatment for MS evolved and improved, CBS News reported that Amerson moved from daily injections to a monthly infusion and even had a port placed in her chest to better receive the medication.

She worked as a school administrator, married and welcomed two daughters, according to the outlet, and she also advocated and raised money for the MS National Foundation.

When she faced MS relapses, Amerson told CBS News that she “just carried on” — and was never told anything else about her health — until 2019. At the time, she was lethargic with numb legs and went to the hospital, missing her daughter’s birthday party.

In the emergency room, after she felt pressure in her eyes and started vomiting, an on-call neurologist examined Amerson and ordered a specialized blood test. Once her condition stabilized, she was released.

A few days later, Amerson received a call from the neurologist, who thought she was suffering from a rare autoimmune disease.

After another neurologist sent Amerson to a specialist, follow-up tests revealed that Amerson never had MS, but rather neuromyelitis optica spectrum disorder (NMOSD), a rare disease of the central nervous system in which the body’s immune system mistakenly attacks its own healthy cells, according to Cleveland Health.

DeMonica Amerson (left) during treatment. Credit: Dr. DeMonica C. Amerson

DeMonica Amerson (left) during treatment.
Credit: Dr. DeMonica C. Amerson

“I’ve been dealing with this since I was 21, and now, almost 20 years later, here’s something different,” Amerson recalled to CBS News.

Admitting, “I had no idea there was another disease that mimicked MS,” Amerson added that when she was told she didn’t actually have MS, she was “so angry” that she “walked out” of the doctor’s office.

Amerson is currently receiving an infusion called Uplizna. She told CBS News it was “working well” and that she was trying to manage her health issues “day by day.”

“I choose not to give up. I choose not to give up. I choose to keep going,” Amerson told the outlet.

“I was angry. I don’t want to say I got over it, but I accepted it,” she added. “I said, ‘I have to move forward. What does that look like?’ “

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