Let's talk simply about ADEM (Acute Disseminated Encephalomyelitis): a sudden, severe neurological disease

Let's talk simply about ADEM (Acute Disseminated Encephalomyelitis): a sudden, severe neurological disease

Imagine that you or your child has a common cold or flu and gets better in a few days. While everyone is happy, after that illness has subsided, a new illness suddenly starts in about a week or two. Suddenly, you lose your strength, your vision decreases, you have difficulty speaking, you have a severe headache and you start vomiting. How scared would we be if something like this happened? Today, we are talking about a serious illness that can be suspected at such a time, although rare, requires immediate treatment. This disease is called ADEM (Acute Disseminated Encephalomyelitis) .

What is ADEM (Acute Disseminated Encephalomyelitis)?

Simply put, ADEM is a sudden inflammation or swelling of our central nervous system , that is, the brain and spinal cord. It is like a brain fever.

Let's understand this a little more simply. The nerve fibers in our body are like electrical wires. There is a plastic covering around the electrical wires, right? That is what allows the electricity to travel accurately and quickly and protects the wire. Similarly, there is a protective sheath, a covering called "myelin" around our nerve fibers. This myelin sheath is what allows messages (signals) to travel quickly and accurately through the nerves from one part of the body to another.

In ADEM, our own immune system mistakenly attacks this myelin sheath. Then it starts to be destroyed and damaged. Just like the plastic on an electric wire has come loose. Then the nerve messages don't travel properly. That's why symptoms like numbness in the limbs, blurred vision, and difficulty speaking occur.

This disease is called 'acute' because the symptoms appear suddenly, within a few days. It also usually occurs only once in a lifetime. However, it can very rarely recur.

ADEM is a rare disease. According to surveys, only about one in 150,000 people in a country like the United States develops this disease. So there is no need to be too afraid of this, but it is very important to be aware.

What are the symptoms of ADEM?

The symptoms of ADEM can vary greatly, depending on which part of the nervous system is affected. However, they usually appear about a week or two after a viral or bacterial infection (such as the flu, measles, or chickenpox) has subsided.

For easier understanding, let's divide these features into two parts.

Type of symptom Possible symptoms
General characteristics

  • Fever
  • Severe headache
  • Nausea and vomiting
  • Confusion
  • Fatigue and drowsiness

Characteristics related to the nervous system

  • Numbness or tingling sensation in the hands and feet
  • Difficulty swallowing
  • Loss or blurred vision in one or both eyes (Optic Neuritis)
  • Muscle weakness in an arm, leg, or one side of the body (paralysis)
  • Difficulty walking, loss of balance
  • Seizures

The severity of these symptoms can vary from person to person. For some, they may be mild and go away on their own, while for others, they may be severe enough to require hospitalization.

Why does something like this happen?

The exact cause of ADEM is still not 100% known, but doctors and scientists believe it is caused by a malfunction in our own immune system .

Let's understand this this way. Our immune system is like the army of our country. The job of this army is to recognize and attack enemies like viruses and bacteria that come from outside, and protect us from diseases. But what happens in ADEM is that this army makes a small mistake. After they finish fighting an enemy that has come into the country (for example, a flu virus), they start attacking the myelin sheath in our own nervous system, thinking it is an enemy. It's like attacking a military base in your own country, thinking it is an enemy army. This is called an 'autoimmune reaction' . This attack causes inflammation and swelling in the nervous system.

Between 70% and 80% of ADEM patients have an infection before symptoms appear. The most common infections that precede ADEM are:

  • Influenza (Flu)
  • Measles
  • Mumps
  • Rubella
  • Chickenpox
  • Epstein-Barr virus

Another recent finding is that some children may also develop ADEM due to a condition called MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease) , another specific condition involving the immune system.

How is ADEM diagnosed?

Your doctor will first ask you a detailed question about your symptoms and perform a neurological examination. They will then perform several tests to confirm the diagnosis of ADEM and rule out other conditions that may cause similar symptoms.

The main tests performed are:

1. MRI scan (Magnetic Resonance Imaging)

An MRI is a test that uses a strong magnetic field and radio waves to take very detailed pictures of our brain and spinal cord. It does not use X-rays. On an MRI scan of someone with ADEM, areas of damage to the myelin sheath (lesions) can be clearly seen as white spots. The doctor will look at the location and nature of these spots to determine whether it is ADEM.

2. Spinal Tap / Lumbar Puncture

The name may scare some people, but it's a very careful test that your doctor will perform. It involves turning you on your side and inserting a small needle into your lower back to take a small sample of the fluid that surrounds your brain and spinal cord , called cerebrospinal fluid (CSF) . People with ADEM have an increased number of immune system cells, especially white blood cells. This can be very helpful in confirming the disease.

In addition, blood tests are also performed.

What are the treatments for ADEM?

The main goal of treating ADEM is to quickly reduce the inflammation in the brain and spinal cord and stop the immune system from malfunctioning. Your doctor may use several treatments to achieve this.

Treatment method A simple explanation
Steroid Medications This is the main treatment that is given first. High doses of steroid drugs are given intravenously for several days. This suppresses the immune system and reduces swelling quickly. After the intravenous treatment is stopped, you may be asked to take oral tablets for a while.
IVIG (Intravenous Immune Globulin) This treatment is given to people who do not respond well to steroids. It involves giving the body antibodies taken from the blood plasma of thousands of healthy people through a vein. This also helps control our immune system, which is malfunctioning.
Plasma Exchange / Plasmapheresis This is a slightly more complicated treatment. It is only done for people with severe symptoms. Here, the patient's blood is passed through a machine, and the blood plasma (the liquid part) is separated and removed. Because the wrong antibodies are in this plasma. Then the blood cells are re-infused into the body with clean plasma. This can stop the immune system from attacking.

How long will it take to recover? What is the outlook?

This is the biggest question on everyone's mind. The best news about ADEM is that the majority of people diagnosed with the disease make a full or near-full recovery .

Most people start to feel better within a few days of starting treatment. However, depending on the severity of the symptoms, it can take several months, sometimes up to 6 months, to fully recover. Very rarely, some people may continue to have minor vision problems or numbness.

Very rarely, and only if the inflammation is very severe, is it life-threatening. Therefore, it is essential to seek medical advice as soon as symptoms appear.

When should you see a doctor?

If you or someone in your family, especially a child, develops the symptoms we've discussed after recovering from an infection like a cold or flu, see a doctor immediately without delay.

  • Sudden loss of consciousness
  • Inability to walk or stumbling
  • Blurred or loss of vision
  • Difficulty speaking
  • Seizures without a cause

If you have these symptoms, don't just stay home and assume that it's normal. The best thing to do is to go to a hospital, especially an Emergency Treatment Unit (ETU), as soon as possible. Because in these types of illnesses, the sooner treatment is started, the better the chance of recovery.

Take-Home Message

  • ADEM is a sudden inflammation of the nervous system that usually occurs after a viral or bacterial infection.
  • This is caused by our own immune system mistakenly attacking the protective myelin sheath of the nerves.
  • This is most commonly seen among children and young people.
  • If you experience symptoms such as sudden loss of consciousness, loss of vision, or difficulty walking, do not ignore them. See a doctor immediately.
  • The disease can be accurately diagnosed with MRI and spinal fluid tests.
  • If treatment (such as steroids) is started early, most people who develop ADEM will recover almost completely.

ADEM in Sinhala, Neurological Disease, Encephalitis, Myelin, Autoimmune Disease, Nervous System, ADEM Symptoms

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