Neuromyelitis Optica Spectrum Disorder (NMOSD)


Neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease that affects the optic nerves and the spinal cord. This debilitating disease typically leads to pain, weakness, and loss of vision function. Patients may experience a single long-lasting attack, but often relapses occur over time.1

NMOSD medical treatment involves a wide group of healthcare professionals. This group includes not only the primary care physician of the patient, but also neurologists, ophthalmologists and neuro-ophthalmologists, physical and occupational therapists, nutritionists, and psychologists.1,2

The primary care physician’s role is essential when NMOSD is a potential diagnosis. They can quickly connect the patient to a neurologist that will follow up on the diagnosis.2 As the disease progresses, a diversified clinical team will be important to implement treatment and monitor clinical outcomes. As NMOSD is a complex disease, patients can ultimately benefit from a multidisciplinary approach. Patients with NMOSD typically experience pain that can affect specific parts of the body, such as the eyes,3 but pain can also affect other parts of the body. Different specialists such as pain physicians, physical and occupational therapists, and psychologists can work together to offer pain relief to these patients.2

Neurologists

Neurologists are dedicated to diagnosing, treating, and managing diseases that affect the brain and nervous system.4 Patients with NMOSD will consult a neurologist regularly in the course of the disease or after hospitalization.2 Pharmacological treatment will be also prescribed and monitored by these doctors.5 Patients may be referred to other specialized clinicians, such NMOSD neurologists, who are mainly focused on that particular disease and can guarantee that the correct diagnosis is made.2

Ophthalmologists

Ophthalmologists are responsible for preserving visual function and providing eye care.6 They have a central role in identifying and managing conditions such as the optic neuritis that characterizes NMOSD. In addition to liaising with neurologists, ophthalmologists can provide help when establishing contact with local support services for patients who are visually impaired.2

Physical and Occupational Therapists

Physical therapists are responsible for evaluating conditions such as weakness of the arms and legs, stiffness, poor balance, and spasms. A physical therapist will prepare prevention and rehabilitation plans that are unique for each patient and include specific exercises to improve body strength, coordination, mobility, and balance. These specialists also interact directly with neurologists to discuss possible pain that the patient may be experiencing while performing particular activities.2

As disability accumulates, patients with NMOSD may find it difficult to perform some daily personal or professional activities. Occupational therapists can work with these patients to help them establish new ways of performing their routines and therefore help them keep their independence and well-being. They can also provide information and advice on equipment that can aid patients in maintaining independence throughout their daily life.2

Nutritionists

A nutrition specialist will help patients to formulate a healthy and balanced diet that can also reduce levels of inflammation. Nutritionists can also provide support on vitamin D and calcium supplements that may be of interest to patients with NMOSD.2

Psychologists

Living with NMOSD may cause emotional distress for patients.2 Adjustments to different routines and the use of visual and locomotion aids may also lead to anxiety and stress, not only in the patients but also for their families and caregivers. Psychologists can help patients cope with the emotions that they experience during the management of their disease.7 

How to Find an NMOSD Specialist

There are different approaches that help in finding an NMOSD specialist. Referral by other doctors, such as a primary care physician, can be an option. Other NMOSD patients can also be a source for recommendations. Specialists may also be found through published resources that provide specialists’ names and contact information.8

Additionally, support and advocacy organizations may help patients find healthcare specialists. The Genetic and Rare Diseases Information Center (GARD) provides information on many diseases, including NMOSD, and directs patients to support organizations, such as the Guthy-Jackson Charitable Foundation (GJCF).1,8 The GJCF is a nonprofit organization that promotes and funds basic and clinical research on NMOSD.9 The website of this foundation provides a resource called “Connect the Docs,” an international online directory that patients can use to find a network of NMOSD specialists. The GJCF has already identified more than 200 clinicians all over the world that can be found through this resource.10

References

1. Neuromyelitis optica spectrum disorder. Genetic and Rare Diseases Information Center. Accessed October 15, 2021.

2. Neuromyelitis optica (NMO): what you need to know: a guide for patients, their families and caregivers (third edition). Guthy-Jackson Charitable Foundation. Accessed October 15, 2021.

3. Neuromyelitis optica spectrum disorder. National Organization for Rare Disorders. Accessed October 15, 2021.

4. What is a neurologist? American Academy of Neurology. Accessed October 15, 2021.

5. Covert J. Meet your NMOSD healthcare dream team. HealthCentral. September 17, 2020. Accessed October 15, 2021.

6. Churchill J, Gudgel DT. What is an ophthalmologist? American Academy of Ophthalmology. April 7, 2021. Accessed October 15, 2021.

7. What do practicing psychologists do? American Psychological Association. December 11, 2019. Accessed October 15, 2021.

8. How to find a disease specialist. Genetic and Rare Diseases Information Center. Updated June 13, 2019. Assessed October 15, 2021.

9. About us. Guthy-Jackson Charitable Foundation. Accessed October 15, 2021.

10. Connect the Docs. Guthy-Jackson Charitable Foundation. Accessed October 15, 2021.

Reviewed by Harshi Dhingra, MD, on 10/15/2021.

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