NMOSD

NMOSD

Neuromyelitis Optica Spectrum Disorders (NMOSD) 

What is NMOSD? 

Neuromyelitis Optica Spectrum Disorders (NMOSD) are rare autoimmune conditions that cause inflammation in the optic nerves, spinal cord, and specific areas of the brain. Although NMOSD can look similar to multiple sclerosis it is now recognised as a separate condition with its own tests, treatments, and support needs. 

Many people with NMOSD have a specific antibody in their blood called AQP4IgG (“aquaporin-4”), which helps confirm the diagnosis.  

Common Symptoms

NMOSD symptoms usually occur in sudden episodes called “attacks.” These can include: 

Vision Changes

  • Blurred or reduced vision
  • Pain with eye movement
  • Visual loss in one or both eyes

Spinal Cord Symptoms

  • Weakness or heaviness in arms or legs
  • Numbness, tingling, or burning sensations
  • Problems with bladder or bowel function

    • Other Symptoms

  • Persistent hiccups, nausea, or vomiting (linked to a small brain region called the area postrema)

    • Early treatment is important, because untreated attacks may lead to lasting disability.

    How is NMOSD Diagnosed?

    Diagnosis Involves

    • Listening to your symptom history
    • MRI scan of your brain and spinal cord
    • Eye assessments including photographs of the back of your eyes
    • Blood tests, especially AQP4IgG
    • Sometimes a lumbar puncture and imaging of other parts of the body is required to look for other auto-immune conditions of the nervous system.

    Treatment

    If you notice sudden changes in vision, weakness, or feeling unwell — seek urgent medical care. Early treatment can make a big difference.  

    Most attacks are treated quickly with: 

    • Highdose IV steroids, to reduce inflammation 
    • Plasma exchange, if symptoms don’t improve enough 


    Fast treatment helps minimise longterm effects.      

    Preventing Future Attacks

    Longterm treatment aims to reduce relapses. Options may include: 

    • Immunemodulating therapies (“immune suppressants”) chosen by considering individual circumstances and risk factors — this might include tablets or medications given by intravenous infusion  
    • Tablets for preventing attacks of NMOSD include prednisone, azathioprine, mycophenolate mofetil, and methotrexate 
    • In New Zealand, rituximab is the only Pharmac-funded medication given by intravenous infusion for NMOSD. Internationally, other medications are used but are currently not available or are not funded in New Zealand for NMOSD. These include inebilizumab, satralizumab, eculizumab, tocilizumab, and ravulizumab 
    • Supportive care such as physio, occupational therapy, and vision support 


    Your care plan will be personalised to help protect your health and quality of life.     

    Living with NMOSD

    Have a flare-up plan – know who to call and where to go if symptoms suddenly worsen. Early treatment is important.  

    Vision support – many people benefit from orthoptic assessments and low-vision strategies.  

    Mobility & strength – physiotherapy and occupational therapy can help you stay active and confident.  

    Regular blood tests and monitoring is important, especially if you are on long-term preventative therapies. These treatments can weaken the immune system and make you more vulnerable to infection.  

    Emotional and whānau support- counselling, peer support groups, and family education can help you feel less alone. 

     

    Learn More

    MS Australia – NMOSD Information (easy-to-read, reliable information) [msaustralia.org.au]