Neuromyelitis optica spectrum disorders (NMOSD) affect the spinal cord and optic nerves (nerves that carry visual messages to and from the brain). Symptoms include pain, weakness, bowel and bladder problems, and temporary vision loss. NMOSD usually occurs in adulthood, but symptoms may start at any age. Some people have a single attack of symptoms lasting months, but in most people the symptoms come and go over time. People with NMOSD may develop permanent muscle weakness and vision loss. The cause of NMOSD is unknown. It occurs when the body’s immune system mistakenly attacks healthy cells in the spinal cord and eyes. It can be diagnosed by a clinical exam, MRI looking for specific signs, and blood tests looking for certain antibodies.
Although neuromyelitis optica spectrum disorder (NMOSD) was identified over a century ago, many people are unaware of it. Black people, in particular, need to be wary as it’s been found to affect them more than other ethnicities.
Symptoms of this disease may start to appear at a variety of ages.
The age symptoms may begin to appear differs between diseases. Symptoms may begin in a single age range, or during several age ranges. The symptoms of some diseases may begin at any age. Knowing when symptoms began to appear can help medical providers find the correct diagnosis.
Symptoms related to this disease may affect different systems of the body:
According to the National Organization for Rare Disorders (NORD), more than 95 percent of patients with NMOSD report no relatives with the disease. However, approximately three percent report having other relatives with the condition.
There is also a strong association with a personal or family history of autoimmunity, which is present in 50 percent of cases, NORD notes.
NMOSD is an autoimmune disease, however, the exact cause for the autoimmunity is unknown.
Building a medical team can help speed diagnosis and improve medical care. The primary care provider (PCP) is usually the center of the team. Your healthcare providers may refer you to other specialists for evaluation and treatment of developing symptoms. Your medical team may change as your medical needs change over time.
Understanding which doctors treat which body systems can help you find the best care for your disease.
Members of the medical team for Neuromyelitis optica spectrum disorder may include:
Additional specialists may include:
Once your healthcare provider gathers some basic information such as your medical history and any previous diagnoses, they will perform a physical exam.
During the physical exam, the health care provider will look for physical signs of a medical problem, such as pain and swelling or the presence of liquid or solid masses within the body. The methods used during the exam may differ, depending on the symptoms, but are common and routine procedures.
Depending on the information gathered and the results of the physical exam, your healthcare provider may recommend specific lab tests, such as a blood draw; imaging studies, such as an X-ray or MRI; or clinical procedures, such as a hearing test. If any of your symptoms worsen or change after your physical exam, it is important to follow up with your healthcare provider.
