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 MOGAD is a unique disease for each individual, unfortunately there is no easy answer. However, there are some common factors that unite people with MOGAD, and some common feelings that they experience along the way. For some people, this means learning all they can about MOGAD 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. Still, 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 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 doubly hard to explain to others when you are just starting to understand things yourself. 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, 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; including 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 MOGAD 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, as well as other specialists such as rehabilitation, continence, and psychology, 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.

As many symptoms of NMOSD are the result of central nervous system demyelination, the symptoms can be similar to those experienced in MS. The MS symptom pages may be helpful to provide explanation, advice and resources in managing these symptoms, which often vary from person to person.

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. Each of the state MS organisations provide services and support to people living with MS and other neurological conditions. They also provide assistance to people living with MOGAD and help with:

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Myelin oligodendrocyte glycoprotein antibody disorders (MOGAD)