Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD)

What is MOGAD?

Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is an autoimmune condition where your immune system (antibodies) mistakenly attacks parts of your central nervous system. MOG is part of the protective cover that surrounds nerves (myelin) in your brain, spinal cord and eyes (optic nerves).

Your immune system protects your body from things that cause illness like viruses and bacteria. Sometimes, the antibodies in your immune system don’t get the right instructions to do their job. When this happens, your immune system confuses a healthy part of your body as a threat. This creates inflammation.

An attack on myelin is known as demyelination. When antibodies damage myelin, they affect the messages (nerve signals) that pass from your brain and spinal cord to the rest of your body.

Common symptoms of MOGAD include vision loss, muscle weakness and loss of coordination. You may hear your provider refer to these symptoms as optic neuritis, transverse myelitis and acute disseminated encephalomyelitis (ADEM).

What are the types of MOGAD?

The two main types of MOGAD include:

• Monophasic MOGAD: You only experience an attack of symptoms once.
• Relapsing MOGAD: Symptoms go away for a period of time (remission) before coming back (relapse).

Is MOGAD a rare disease?

MOGAD is a relatively rare demyelinating disorder. As awareness increases, healthcare providers expect numbers to increase. It affects an estimated 1 to 3 people per million each year.

What are the symptoms of MOGAD?

Symptoms of MOGAD affect different parts of your body, including your eyes, spinal cord and brain.

Eye symptoms of MOGAD are known as optic neuritis. They can affect one or both eyes and include:

• Blurry vision.
• Double vision.
• Vision loss.
• Eye pain.
• Color vision loss.

Spinal cord symptoms (transverse myelitis) include:

• Muscle weakness.
• Numbness.
• Bowel or bladder control issues.
• Difficulty emptying your bladder.
• Stiff muscles (spasticity).
• A sharp, shooting pain or a tingling sensation in your neck, back or abdominal region.

Symptoms that affect your brain (also known as ADEM) include:

• Confusion.
• Loss of balance and coordination.
• Headache.
• Behavioral changes.
• Loss of consciousness.
• Seizures.

MOGAD symptoms come and go. You may experience periods without any symptoms before symptoms appear again (relapse).

Are MOGAD symptoms different in adults and children?

Symptoms can affect each person differently, especially by age.

Among children, MOGAD most often targets the brain (ADEM), which causes symptoms like confusion and a loss of coordination. It will sometimes accompany optic neuritis.

In adults, MOGAD targets your spinal cord and eyes to cause symptoms like weakness or numbness and blurry vision.

What causes MOGAD?

The cause of MOGAD is unknown. MOGAD isn’t inherited and doesn’t have a known genetic cause.

What are the complications of MOGAD?

Damage to myelin can permanently affect how your body functions. You may experience the following complications:

• Blindness.
• Bladder or bowel dysfunction.
• Paralysis (arms and legs).
• Chronic pain.
• Chronic fatigue.
• Cognitive impairment (difficulty learning, remembering and thinking).

It can be difficult to live with and manage MOGAD on your own. When symptoms happen, it can pull you away from activities you enjoy and leave you feeling helpless. Because of this, many people experience depression with MOGAD.

How is MOGAD diagnosed?

A healthcare provider will diagnose MOGAD after a physical exam, neurological exam and testing. They’ll learn more about your symptoms and medical history during the exam. Tests look for identifying markers of MOGAD like:

• Increased white blood cell counts (which happen during inflammation).
• Brain or spinal cord lesions.
• Oligoclonal bands (groupings of antibodies), which are commonly absent in MOGAD but present in other diseases.

Helpful tests to diagnose MOGAD include:

• Blood tests.
• Vision exam.
• Lumbar puncture.
• MRI (magnetic resonance imaging) scan.

MOGAD can be difficult to diagnose. Symptoms look similar to other conditions, like multiple sclerosis for example.

When does a MOGAD diagnosis happen?

Most people receive a MOGAD diagnosis in their 20s or 30s, but the condition can affect anyone at any age. Children are usually diagnosed before age 11.

Is MOGAD curable?

There isn’t a cure available for MOGAD at this time.

How is MOGAD treated?

Treatment for the sudden onset of MOGAD symptoms (acute) includes:

• Steroids (methylprednisolone), given intravenously (through a vein in your arm) for three to five days.
• Plasma exchange, where a machine will remove plasma from your blood, separate it from your blood cells and then return a plasma replacement liquid with your blood cells back into your body.
• Intravenous immunoglobulin (IVIG), which replaces antibodies in your blood with donor antibodies given through a vein in your arm.
• Immunosuppressant medications you take orally (by mouth).

Long-term treatment to prevent MOGAD symptom relapses include:

• Immunosuppressant medications.
• Mycophenolate mofetil.
• Rituximab.
• Azathioprine.
• IVIG infusions or subcutaneous immunoglobulin injections.

Each type of treatment comes with possible side effects. Your provider will explain how each treatment works and what to look out for before you begin treatment.

Your provider may recommend participating in rehabilitation programs if complications arise. Rehabilitation can help you learn how to complete your daily routine and move around independently if myelin damage affects your vision and physical movement.

Can MOGAD be prevented?

There isn’t a way to prevent MOGAD. Research is ongoing to learn more. Your provider might recommend participating in clinical trials (studies or tests on people) to learn about possible treatment and prevention methods.

What’s the prognosis for MOGAD?

Studies are ongoing to learn more about the prognosis for MOGAD. Most often, people have a good outlook. You might experience permanent changes to your vision. Also, certain treatments (like long-term use of immunosuppressants) may make you more at risk of developing side effects like infections.

What is the life expectancy for MOGAD?

MOGAD doesn’t directly affect your life expectancy. Many factors go into evaluating your life expectancy. Your healthcare provider can give you the most up-to-date information based on your situation.

When should I see a healthcare provider?

Let your provider know if you notice the following:

• Sudden onset of symptoms.
• Changes to your vision.
• Issues with your ability to move.
• Symptoms that get worse after treatment.
• Side effects of treatment.

You know your body best. If something doesn’t seem right, reach out to your provider.

Contact emergency services if you have a seizure for the first time.

What questions should I ask my healthcare provider?

• What type of treatment do you recommend?
• Do I need long-term treatment?
• What are the side effects of treatment?
• What should I do if symptoms flare up?