Michael Levy, MD, PhD, Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital and Associate Professor in Neurology at Harvard Medical School, discusses the results of a study assessing attitudes of neuromyelitis optica spectrum disorder (NMOSD) patients towards diagnosis and treatment. These results were presented at the 2021 American Academy of Neurology (AAN) Annual Meeting.

NMOSD is a rare central nervous disorder that primarily affects the spinal cord and optic nerves. Symptoms of NMOSD may include blindness in one or both eyes, weakness or paralysis of arms or legs, spasming, loss of sensation, uncontrollable vomiting and hiccups, and bladder/bowel problems due to spinal cord damage.

As Dr. Levy explains, the objective of the study was to better understand the experience of NMOSD patients during multiple stages of the disease. The study included 151 NMOSD patients who completed a survey which covered basic demographics, symptoms, medical testing to reach a diagnosis, and the patient’s psychosocial responses to the process. The researchers found that the average time to diagnosis was 2.2 years (SD = 3.2) and that the initial contact with a doctor primarily felt “not helpful” or “somewhat helpful” to patients primarily due to non-specific diagnosis and/or treatment. Initial reactions to diagnosis were most commonly fear/shock and frustration. Once referred to specialists, the majority (98%) reported finding a professional who could help. Overall, most patients reported that having a diagnosis and finding a specialist gave them a comprehensive plan with the best hope for their future. 

To learn more about NMOSD and other neurological disorders, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/