If you’ve received a diagnosis of neuromyelitis optica (NMO), it’s important to get early and ongoing treatment from qualified health experts.
Getting treatment may help limit the number of relapses you have, prevent potential complications, relieve symptoms, and improve your quality of life.
Take a moment to learn how you can find specialists to meet your needs.
NMO is a rare autoimmune disorder that affects the spinal cord and optic nerves, which carry signals from the eyes to the brain. It can lead to vision loss, muscle weakness, and paralysis. Treatments help manage the symptoms and prevent relapses.
The main doctors involved in diagnosing and treating NMO include:
- neurologists, who treat conditions that affect the spinal cord and brain
- ophthalmologists, who specialize in conditions that affect the eyes
- physical therapists,who may recommend exercises to improve your mobility, flexibility, coordination, and strength
- occupational therapists, who may recommend exercises, adaptive equipment, environmental modifications, or other strategies to help manage changes in your physical functioning and abilities
Your treatment team may also include other specialists, such as:
- psychiatrists, who provide pain management and rehabilitation care
- mental health specialists, who may provide behavioral counseling and other support to promote good mental health
- social workers, who may help you learn about and access disability benefits, workplace accommodations, or other support services
Other healthcare professionals such as nurses and pharmacists may also provide care and information you need to manage NMO.
Your primary care doctor or neurologist can help you learn more about the healthcare professionals who might be involved in your treatment.
If your doctor thinks you might benefit from seeing another healthcare professional, they may refer you to a specialist with experience with NMO.
To find a qualified specialist:
- Search the Guthy Jackson Charitable Foundation’s Mapping NMO database.
- Identify healthcare professionals who are currently conducting clinical trials or have authored past studies on NMO. Search “neuromyelitis optica” in the ClinicalTrials.gov and
- Ask for recommendations from other people with NMO, such as members of patient support groups.
- Contact hospitals, university health centers, or other treatment centers in your area to learn if they employ any specialists who have experience with NMO.
It’s a good idea to meet with a specialist to talk about their experience before starting treatments. Consider asking them:
- What are your qualifications?
- Are you licensed to practice in this state?
- How much experience do you have treating NMO?
- Have you published any research on NMO?
- Is there a waiting period for your services? When can I see you?
- How much do your services cost?
- What health insurers do you accept?
- Do I need to get a referral from my doctor to see you?
If you have health insurance, you may also contact your insurance provider to learn if your insurance plan will cover some or all of the costs of care from a specialist.
If you don’t have health insurance, a social worker may be able to help you learn about and access financial support services to help offset the costs of specialty care.
If you receive care as part of a clinical trial, a member of the research team should talk to you about the potential benefits, risks, and costs of participating in the study.
To get the most out of each visit, you might find it helpful to:
- Prepare a list of questions, concerns, or goals before your appointment that you’d like to address with your specialist.
- Take notes during your appointment, or ask your specialist if you can use your phone or other device to record your conversation.
- Ask your specialist for clarification if they tell or show you something that you don’t understand.
- Bring a friend, family member, or professional support person with you to translate, take notes, or provide other assistance.
Let your specialist know if your condition or aspects of your treatment plan have changed since your last visit.
Your specialist should listen closely to any questions and concerns that you have. They should also try to answer your questions and share information in terms that you can understand.
If you don’t feel supported by your specialist, it may be time to look for someone else who can better meet your treatment needs.
If you’ve been diagnosed with NMO, multiple healthcare professionals may be involved in your treatment plan. They may include neurologists, ophthalmologists, psychiatrists, physical therapists, and more.
Your primary care doctor or neurologist can help you learn more about the role that various professionals may play in your care.
Let your treatment team members know if you have any questions or concerns about your condition or treatment options.