Acute disseminated encephalomyelitis, or ADEM, is a rare neurological condition that often occurs after a viral or bacterial infection. It causes inflammation in your central nervous system. Common symptoms include a headache, confusion, weakness and numbness. It can happen to anyone but affects children more often than adults.
Acute disseminated encephalomyelitis (ADEM) is a neurological condition characterized by an episode (attack) of inflammation in your central nervous system. The attack often damages the protective covering around your nerve axon, called the myelin sheath, which helps transmit information between nerve cells.
Like the plastic cover around electrical wires, myelin surrounds your nerve fibers to help electrical signals move to other nerve cells in your body. If you have damage to your myelin, you may experience symptoms like vision loss and muscle weakness.
A healthcare provider may call ADEM a “demyelinating” condition. This condition is acute, meaning sudden. ADEM usually only occurs once but can sometimes happen again.
ADEM is rare. Studies estimate that ADEM affects 1 in every 125,000 to 250,000 people in the United States.
Symptoms of ADEM usually follow a viral or bacterial infection. The symptoms vary based on where the inflammation occurs and could include:
Neurological symptoms may include:
Your symptoms and the severity of your symptoms can vary widely.
The exact cause of ADEM is unknown. Research suggests that an infection could trigger your immune system to respond to the threat abnormally, which causes symptoms of ADEM. When a viral or bacterial infection enters your body, your immune system works to get rid of the infection that makes you sick. If you have ADEM, your immune system can mistake certain parts of your central nervous system for the bacteria or virus and attack it. This results in inflammation (swelling), which then causes the symptoms of ADEM.
Approximately 70% to 80% of people diagnosed with ADEM experience an infection or illness before they experience symptoms of ADEM. Most cases of ADEM begin about seven to 14 days after the infection. Some common infections associated with ADEM include:
While many different bacteria, viruses and other infections relate to ADEM, the cause doesn’t appear to be by any one infectious agent.
An increasingly recognized cause of ADEM, especially in children, is a condition known as myelin oligodendrocyte antibody-associated disease (MOGAD). This is thought to be an autoimmune condition that attacks the central nervous system and can sometimes cause ADEM.
Anyone can develop ADEM. It’s more common among children than adults. You’re more likely to get ADEM if you recently had an infection.
Complications of ADEM may include:
In very rare cases, symptoms of ADEM can be fatal.
Ongoing symptoms after treatment may include:
Testing is necessary to look for underlying conditions that may cause the ADEM attack, such as MOGAD. Tests to diagnose ADEM usually include blood tests, as well as:
Magnetic resonance imaging (MRI) is a type of imaging test. It looks for changes deep within your brain. There are three areas in your central nervous system (brain, spinal cord, optic nerves) where a healthcare provider will look for changes, like lesions or spots, caused by ADEM:
Months after your first MRI, your healthcare provider may order another MRI to monitor how these areas of your central nervous system change over time.
A spinal tap or lumbar puncture is a diagnostic test that evaluates the cause of neurological symptoms. The lumbar puncture allows your neurological team to test your cerebrospinal fluid (CSF). CSF is a clear, colorless fluid that circulates around your brain and spinal cord, protecting it and providing it with nutrients.
In ADEM, your spinal fluid often shows an increase in white blood cells, predominantly lymphocytes. These cells are an active part of your immune system. A healthcare provider may remove a sample of CSF to test your cells’ reaction to certain bacteria or viruses thought to trigger ADEM. It can also check for other neuroinflammatory diseases.
Treatment for ADEM focuses on reducing inflammation in your brain and spinal cord. Treatment may include:
Research is ongoing to learn more about this condition and find new treatment options that can help you feel better.
The side effects of short-term steroid therapy are usually temporary but may include:
The side effects and complications of IVIG may include:
The complications of plasmapheresis may include:
Most people who receive treatment for ADEM feel better a few days after they finish treatment. Depending on the severity of your symptoms, it may take up to six months to recover. In rare cases, some people aren’t able to fully recover.
There isn’t a way to prevent ADEM. You can reduce your risk by practicing good hygiene to avoid viral and bacterial infections.
Most people diagnosed with ADEM make a full or nearly complete recovery after treatment. Very rare cases are life-threatening if inflammation is severe. Your healthcare provider will be able to give you a better idea about your prognosis.
The majority of people diagnosed with ADEM have a normal life expectancy. The condition is rarely life-threatening.
An attack of symptoms caused by ADEM usually only happens once but can recur (come back) depending on the underlying cause. With treatment, ADEM can go away, but there’s a chance your symptoms may happen again.
Visit a healthcare provider if you experience symptoms of ADEM, especially after an infection.
A note from Cleveland Clinic
It can be frustrating, alarming and confusing to experience symptoms of a condition that can prevent you from feeling well, walking or seeing clearly. A healthcare provider can help you find a treatment option that addresses the inflammation that happens to your central nervous system. Treatment with infusions may take several hours over the course of a few days. During your treatment, maybe find a good book to read to help you pass the time until your treatment finishes. Most people don’t experience more than one attack of symptoms after treatment, but recurrence is possible.
Last reviewed by a Cleveland Clinic medical professional on 05/30/2023.
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