Myelin oligodendrocyte glycoprotein antibody disorders (MOGAD)

There are some other demyelinating 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 myelin oligodendrocyte glycoprotein antibody disorders (MOGAD).

Find information here on MOGAD, including information about the disease, recent research findings and resources for people living with MOGAD.

Newly diagnosed? What now?

If you or a loved one has been recently diagnosed with MOGAD, you will most likely be wondering what comes next, and what the future holds. As with other demyelinating conditions, MOGAD presents differently for each person, and whilst the prognosis can be good for many people, it takes time to establish how MOGAD will affect each individual in the long-term. However, there are some common factors that unite people with MOGAD, and indeed most of the demyelinating disorders. The suddenness of the onset, the worry about vision loss, whether walking will be affected and if and where the next attack might be are some common worries felt by people with MOGAD. In the beginning, there may be some confusion as the medical team try to unravel the cause of the demyelination and very likely many tests, examinations and blood and spinal fluid samples collected and then often waiting for the results to all come together to confirm the diagnosis.

In the early stages some people want to learn all they can about MOGAD from as many sources as possible, and for others, they simply want to rely on the advice of their specialist or medical team. Most people are somewhere in the middle of these two situations, keen for some information to better understand MOGAD and the impact it is going to have on their lives, but also not wishing to be overwhelmed with too much information. 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 listed on this page are trusted sources of support and education and can also be helpful for family members and friends to learn about MOGAD. 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 MOGAD.

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 MOGAD either, which makes it hard to explain to others when you are just starting to understand things yourself. If optic neuritis has been a feature of the first attack of MOGAD, it can be a worrying time as vision is affected and you might be concerned about making a good recovery and being able to function at work or home. Parents of children presenting with ADEM may be feeling particularly vulnerable at this time, after seeing their children experience seizures or behavioural changes that can occur suddenly with acute encephalitis, and also being subjected to an invasion of tests and scans.  It is important at this time is 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 and there can be a lot of new information, 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. This can happen at any time, not just after a first attack. Parents of children with ADEM may also need some help at this time to help them adapt to the suddenness of the situation and what is needed along the road to recovery.

In the early days, 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 at any stage. Connecting 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 MOGAD requires a partnership with your medical team, and one that benefits greatly from open and honest communication. Additionally, there may also be immunologists, ophthalmologists, rehabilitation specialists, continence specialists and psychologists involved in care, depending on the functions affected by MOGAD.

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 capital cities Australia have a dedicated Neuro-Immunology or MS healthcare team care for people with MOGAD, 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 MOGAD 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 MOG project is an American web-based patient support and resource hub and has educational and treatment explanation downloads, including podcasts (called Mogcasts) and a MogBlog. The MOG Project is supported by internationally recognised neuroimmunology specialists and scientists and has valuable information about current and future treatments and many presentations and discussions on current developments in MOG diagnosis and treatment.

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Myelin oligodendrocyte glycoprotein antibody disorders (MOGAD)