Experiences with
Neuromyelitis optica

Symptoms of neuromyelitis optica (NMO)

Symptoms of neuromyelitis optica (NMO) can include:

eye pain and problems with your eyesight or colour vision, in one or both eyes
sharp, burning or shooting pain (nerve pain) in your back, neck, arms or legs
weakness, numbness or paralysis in your arms or legs
muscle spasms, where your muscles suddenly tighten
problems with your bladder and bowels, such as incontinence, constipation or not being able to pee
sexual problems, such as not being able to get an erection
vomiting and hiccoughs

The symptoms vary between people. They can range from mild to severe.

Some people only have symptoms affecting their eyes (called optic neuritis), or only affecting their spinal cord (called transverse myelitis).

Longer-term symptoms

Symptoms may last a few days or weeks. Some people then recover fully, while others have longer lasting problems.

It's common for symptoms to come back, known as relapses. This can happen after a few weeks, months or years. In some people relapses lead to permanent problems such as sight loss or mobility problems.

you think you could have neuromyelitis optica

How neuromyelitis optica is diagnosed

If a GP thinks you could have neuromyelitis optica (NMO) they'll refer you to a specialist (neurologist) for tests and treatment.

NMO can be hard to diagnose because the symptoms vary and are similar to other conditions, such as multiple sclerosis.

You may have tests such as:

blood tests
an MRI scan to check your brain and spinal cord
a lumbar puncture to take a sample of fluid from your spinal cord
examinations and tests to check your eyes and your vision

Treatments for neuromyelitis optica (NMO)

Treatment for neuromyelitis optica (NMO) depends on your symptoms and how severe they are.

Treatment for relapses

When your symptoms first start or if you're having a relapse, where symptoms come back, the main treatments are:

high dose steroid injections
plasma exchange, where some of your blood is removed, treated and then returned to your body

Treatment for symptoms

You may also be offered medicines to help with symptoms, such as:

painkillers
medicines to treat nerve pain, such as amitriptyline or gabapentin
medicines to treat muscle spasms, such as baclofen or carbamazepine
medicines for bladder problems, such as oxybutynin
medicines for bowel problems, such as laxatives

To help with symptoms such as muscle weakness and mobility problems you may be offered:

physiotherapy, including advice on exercises and stretching
occupational therapy to help with daily activities

Treatment to help prevent relapses

You'll usually also need to take medicines long term to help prevent relapses, where your symptoms come back. These may include:

immunosuppressants, such as azathioprine
steroid tablets, such as prednisolone
biological medicines, such as rituximab

Causes of neuromyelitis optica (NMO)

Neuromyelitis optica (NMO) is an autoimmune condition. It happens when your immune system attacks nerves in your eyes or your spinal cord.

It's not known what causes this. Sometimes it happens after a virus or infection.

NMO is not an inherited condition. But it's more common in people with other autoimmune conditions, and those with close relatives who have autoimmune conditions.

It's more common in women and people of Asian or Black African origin.