Living with NMOSD

Living with NMOSD can seem challenging but there are things that you can do to help make your life easier. Learning about NMOSD and how it affects your body is an important step towards managing the condition. It may also help you better understand your treatment.

NMOSD is associated with a wide range of symptoms, so it is important that you always tell your doctor about any symptoms you experience.1,2

If you experience a sudden onset of symptoms, this could indicate an acute attack or relapse.1,3,4 As this could be a potential medical emergency that requires urgent medical attention, you should see a doctor as soon as possible.1,3,4 Prompt treatment of an acute attack is important to prevent the physical impairment that accumulates with each attack.1,3,4
The symptoms of NMOSD can vary according to which organs have been affected by the nerve damage; NMOSD most frequently affects the eyes and spinal cordThe bundle of nerves that runs from the brain through the spine, but the brain can also be affected.5,6 The symptoms are usually experienced as unpredictable occurrences, known as attacks or relapses, which can be painful and cause impaired vision, movement or sensations.1,5,7,8 Another common occurrence in NMOSD is the feeling of fatique.8,9

The lives of people with NMOSD are widely impacted by the disease, and patients often wait for each relapse to be over before starting to cope with the situation and adapting their lifestyle.8

Symptoms are usually experienced in the following organs:
AQP4, aquaporin-4; IV, intravenous; NMOSD, neuromyelitis optica spectrum disorder.
Lana-Peixoto MA, Talim N. Neuromyelitis optica spectrum disorder and anti-MOG syndromes. Biomedicines. 2019;7:42.   Campbell A, Ogundipe OA. Neuromyelitis optica spectrum disorder presenting in an octogenarian. BMJ Case Rep. 2018;2018:bcr2018225601. Chan KH, Lee CY. Treatment of neuromyelitis optica spectrum disorders. Int J Mol Sci. 2021;22:8638.    Carnero Contentti E, Correale J. Neuromyelitis optica spectrum disorders: from pathophysiology to therapeutic strategies. J Neuroinflammation. 2021;18:208.    Wingerchuk DM, Lucchinetti CF. Neuromyelitis optica spectrum disorder. N Engl J Med. 2022;387(7):631–639. Dutra BG, et al. Neuromyelitis optica spectrum disorders: Spectrum of MR imaging findings and their differential diagnosis. Radiographics. 2018;38(1):169–193. Holroyd KB, Manzano GS, Levy M. Update on neuromyelitis optica spectrum disorder. Curr Opin Ophthalmol. 2020;31(6):462–468. Mutch K, et al. Life on hold: The experience of living with neuromyelitis optica. Disabil Rehabil. 2014;36(13):1100–1107. Seok JM, et al. Association of subcortical structural shapes with fatigue in neuromyelitis optica spectrum disorder. Sci Rep. 2022;12(1):1579. Neuromyelitis Optica. National Institute of Neurological Disorders and Stroke. Available at: https://www.ninds.nih.gov/health-information/disorders/neuromyelitis-optica. Last accessed: September 2024.