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- calendar_today October 31, 2026
Living with an Unexpected Diagnosis
In 2001, DeMonica Amerson was diagnosed with multiple sclerosis (MS) after a prolonged period of uncertainty regarding her symptoms. The diagnosis came as a shock: Amerson had no family history of the autoimmune disease, and the route to diagnosis had been marked by confusion. Initial suspicions centered on optic neuritis due to her eye symptoms, then turned to lupus, before a spinal tap ultimately led doctors to conclude she had MS.
Adapting to MS Treatment and Life Changes
For Amerson, a recent college graduate at the time, the diagnosis meant an abrupt shift in her expectations for her future. She soon began daily injections to treat the condition and wrestled with a mix of anger, confusion, and anxiety. Over the years, as MS treatments advanced, Amerson moved from daily shots to monthly infusions delivered via a chest port. Despite experiencing occasional relapses, she maintained her career as a school administrator, started a family, and engaged in advocacy and fundraising through the MS National Foundation.
A Turning Point: Severe Flare and New Testing
In 2019, Amerson experienced a significant health crisis. Suffering from lethargy, numbness in her legs, and pressure in her eyes, she went to the hospital, missing her daughter’s birthday party. Emergency room staff conducted a specialized blood test, and she was eventually discharged. Days later, she was contacted by a neurologist, who suggested she might have a rare autoimmune disorder rather than MS and referred her to a specialist for further evaluation.
The Risk of MS Misdiagnosis
Follow-up testing revealed that Amerson did not have multiple sclerosis, but instead was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune condition. Her experience is not unique. Dr. Robert Bermel of the Cleveland Clinic's Mellen Center for MS told CBS News that studies have found between 15% and 20% of people diagnosed with MS are eventually found to have a different condition. MS can be difficult to diagnose due to its spectrum of symptoms and similarities with other autoimmune diseases. Dr. Josef Gutman of NYU Langone's Long Island Comprehensive MS Care Center explained that misdiagnosis is often discovered when patients’ symptoms do not improve with MS treatments.
Actor Christina Applegate recently brought MS misdiagnosis into the public eye by sharing her own story of being incorrectly diagnosed for nearly five years. Both Bermel and Gutman note that interpreting brain scans is complex, and that diagnostic criteria for MS were updated in 2025 to reduce misdiagnosis risks. In contrast to MS, NMOSD often reveals a specific antibody in blood tests, aiding more accurate diagnoses when actively sought by clinicians.
Moving Forward with a New Diagnosis
Amerson recalled feeling frustrated and angry upon learning she had been misdiagnosed after nearly two decades. “I had been dealing with this since I was 21 years old, and now, almost 20 years later, here comes something different,” she said. However, she resolved to adapt and focus on the future. She began treatment with a medication called Uplinza for NMOSD, which she says is working well, though she continues to experience fatigue and pain.
Amerson's experience has fueled her passion for raising awareness about NMOSD and autoimmune misdiagnosis. Inspired by public figures like Applegate, she remains active in advocacy and hopes her emphasis on perseverance and positivity will inspire her daughters and others. As she put it, “I choose not to give up. I choose not to quit. I choose to keep going forward.”
Related coverage
Source: cbsnews.com.
