Neuromyelitis optica spectrum disorders (NMOSD)

There are some diseases that cause similar symptoms to MS, in which the immune system attacks and damages the central nervous system (brain, optic nerve and spinal cord). One such disease or group of diseases is Neuromyelitis Optica (NMO) or Neuromyelitis Optica Spectrum Disorders (NMOSD) also previously known as Devic’s disease.

Early in the disease course, NMOSD can easily be mistaken for MS, but it is a different immune-mediated disease with different treatment and management.

Find information here on NMOSD, including information about the disease, recent research findings, advice for the newly diagnosed, and resources for people living with NMOSD.

Newly diagnosed? What now?

If you or a loved one has been recently diagnosed with NMOSD, you will most likely be wondering what comes next, and what the future holds. As NMOSD is a unique disease for each individual, unfortunately there is no easy answer. However, there are some common factors that unite people with NMOSD, and some common feelings that they experience along the way. For some people, this means learning all they can about NMOSD from as many sources as possible, and for others, they are not in such a hurry to acquire information and simply want to rely on the advice of their specialist or medical team during these early stages. Others are somewhere in the middle of these two situations, keen for some information, but also not wishing to be overwhelmed. Whichever way you are leaning, do what feels right for you and your loved ones, and be willing to ask for help as, and when, you need it. The resources we have listed on this page are trusted sources of support and education and can also be helpful for family members and friends to learn about NMOSD. The symptom pages on MS can also be helpful, as many of the symptoms are similar and management strategies for MS can also assist in NMOSD.

The first few months after diagnosis can be difficult as you navigate a disease you had very likely never heard of before the first relapse happened. As such a rare disease, many of your loved ones and work colleagues have probably never heard of NMOSD either, which makes it hard to explain to others when you are just starting to understand things yourself. It is important at this time not to overwhelm yourself too much, to just take one step at a time, surround yourself with support, ask questions as they come up for you, and to ask for help if you need it from your medical team.

Take Notes

Keeping a pad and paper (or phone notes) handy is a good idea to jot down things as they come to mind to ask your medical team at your next appointment.

Ask Questions

Sometimes medical appointments can seem overwhelming, so it is good to have questions prepared before you attend to help keep you on track and come away feeling more empowered with the knowledge you need.

Get Help

It is important to let your medical team know how you are feeling and to ask if you need professional help along the way. Meeting up with a psychologist can be empowering and helpful in learning tools to help you navigate living with an unpredictable disease.

In the early days, your mental health can come under threat from many different aspects. This may include the suddenness of the relapse, the severity of the relapse, the many tests to secure the right diagnosis and most likely consultations with several doctors along the way, as well as the various medical treatments and drugs, including high dose corticosteroids. It is important to let your medical team know how you are feeling and to ask if you need professional help along the way. Meeting up with a psychologist can be empowering and helpful in learning tools to help you navigate living with an unpredictable disease. It may be helpful to discuss this with your GP or healthcare team at each visit to stay on top of things and identify early which referrals may be of the greatest help to you. Living with NMOSD is a long-term partnership with your medical team, and one that benefits greatly from open and honest communication. Additionally, there may also be immunologists and ophthalmologists involved in your care, as well as other specialists such as rehabilitation, continence and psychology, depending on the functions affected by NMOSD.

The resources section below lists important sources of information that may be helpful to you and your loved ones. Practical help can be sought from the state and territory MS organisations, who have expertise in demyelinating diseases and can advise on sources of help and various forms of allied health therapies. Some people benefit greatly from support groups where they can talk to people who have been through similar experiences, which provides understanding and encouragement. The most important thing to remember is that your journey is your unique experience, and to ask for the help that you need.

Where to get support and services

Most large tertiary hospitals in Australian capital cities have a dedicated Neuroimmunology or MS healthcare team care for people with NMOSD, usually a neurologist and MS Nurse and sometimes other multidisciplinary staff such as psychologists, Continence Nurses, and physiotherapists, but this does vary from site to site. People living in regional areas may visit their specialist from time to time and be managed in their local community under the care of a local physician or GP. MS Australia provides a list of MS centres around Australia

MS Australia’s member organisations in each state and territory understand NMOSD and can assist with a range of services and support including referral advice and information, everyday tips and tricks, education, emotional support, wellbeing support, symptom management, opportunities to connect with others, employment support, living arrangement support, individual assessment and NDIS and My Aged Care support.

The Guthy Jackson Charitable Foundation is based in the United States and has information, recommended reading and resources on NMOSD.

The Sumaira Foundation is based in the United States, but its mission is to increase global awareness of NMOSD and provide support for those affected by NMOSD. Voices of NMOSD is a directory of hundreds of stories of people living with or affected by NMOSD.

NMO Australia is an initiative of the Centre for Community-Driven Research.

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Neuromyelitis optica spectrum disorders (NMOSD)