Have you ever heard of the term `ADEM` (Acute Disseminated Encephalomyelitis)? This may be new to you. It is a rare condition, meaning it affects very few people, but it can come on suddenly and affect our nervous system. Don't worry, we will talk about it simply, in a way that you can understand.
What is ADEM? Let's understand it simply.
Simply put, ADEM is a sudden inflammation or swelling of our Central Nervous System – that is, the brain and spinal cord. Think of it this way, just like when we get an injury , our body swells up, this causes swelling in some areas of the brain and spinal cord.
This inflammation can damage the protective sheath that surrounds our nerve fibers . This sheath is called the myelin sheath . It's like the plastic covering around an electrical wire. It helps messages travel along the nerves faster. So, when this myelin sheath is damaged, nerve messages don't travel as well. That's when various symptoms appear. Some doctors also call this condition a "demyelinating" condition.
The word "acute" in ADEM means that it occurs suddenly, suddenly . Most of the time, it only happens once in a lifetime. However, it is possible for it to recur very rarely.
How common is this?
ADEM is actually a very rare condition . Surveys show that in a country like America, it occurs in about one in two and a half million people. So, this is not a disease that affects everyone.
What are the symptoms of this condition?
ADEM symptoms usually appear a few days after a viral or bacterial infection . These symptoms can vary from person to person, and also depend on where in the brain or spinal cord the inflammation is located.
Some common symptoms include:
- Fever
- Headache.
- Nausea or vomiting
- Confusion
- Fatigue
In addition, symptoms related to the nervous system may include:
- Numbness or tingling sensation in the limbs
- Difficulty swallowing
- Loss or blurring of vision (optic neuritis)
- Muscle weakness
- Difficulty walking
- Seizures
As you can see, these symptoms and their severity can vary greatly from person to person . Some people may experience very mild symptoms, while others may be affected more severely.
Why does this happen? What are the causes of ADEM?
The exact cause of ADEM is not yet known . However, research suggests that when a virus or bacteria enters our body, our immune system fights it off. However, in a person with ADEM, the immune system mistakenly attacks parts of its own central nervous system . It's like attacking one of its own members, thinking it's an enemy. This mistaken attack causes the inflammation (swelling) mentioned earlier, which then causes the symptoms.
It has been found that between 70% and 80% of people who develop ADEM have an infection or illness before the symptoms of ADEM appear. ADEM symptoms usually begin 7 to 14 days after the infection. Some common infections that may be associated with ADEM include:
- Influenza or Flu
- Measles
- Mumps
- Rubella
- Chickenpox
- Epstein Barr virus
- Cytomegalovirus
- Herpes simplex virus (`Herpes simplex virus`)
Although various bacteria, viruses, and other infections have been linked to ADEM, it does not appear to be caused by a single infectious agent.
Recently, another cause of ADEM, especially in children, has been identified as Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD). This is also considered an autoimmune condition. This means that the body's own immune system attacks its own nervous system. This MOGAD can also sometimes cause ADEM.
Who is at higher risk of developing ADEM?
Anyone can get ADEM. However, it is slightly more common in children than in adults . Also, if you have had a recent infection, your risk of developing ADEM may be slightly higher.
What are the possible complications of ADEM?
ADEM can cause some complications, including:
- Memory loss
- Delayed cognitive processing
- Coma
Very rarely, ADEM symptoms can be life-threatening if they become severe. But that is extremely rare .
Some people may have some symptoms that persist even after treatment:
- Severe headache.
- Numbness
- Trouble with coordination
- Blurred vision
How is ADEM diagnosed?
If you have symptoms of ADEM, a doctor will take a detailed history of your condition, ask about your symptoms, and perform a neurological examination , a general physical exam, and several other tests to determine if you have ADEM .
Tests are also done to check for other underlying conditions, such as MOGAD, that may be causing ADEM. Common tests to diagnose ADEM include blood tests and:
- An MRI scan
- Spinal fluid testing
What does an MRI test look for?
MRI (Magnetic Resonance Imaging) is a special imaging technique that can look for changes deep within the brain. Doctors look for lesions or spots caused by ADEM in three main areas of the central nervous system: the brain, spinal cord, and optic nerves.
- White matter : This is where the nerve fibers are covered in myelin. These appear white on an MRI.
- Gray matter : This contains the bodies of nerve cells. They appear dark on MRI because they lack myelin.
A few months after the first MRI, the doctor may order another MRI to see how these areas change over time.
What is looked for in spinal fluid testing?
This is also called a lumbar puncture . This is an important test to find the cause of neurological symptoms. It involves taking a small amount of your cerebrospinal fluid (CSF). CSF is a clear, colorless fluid that surrounds, protects, and nourishes your brain and spinal cord.
In ADEM, the cerebrospinal fluid contains an increased number of white blood cells, especially lymphocytes . These cells are active parts of our immune system. This CSF sample is used to see how these cells respond to bacteria or viruses that are thought to be causing ADEM, and to check for other neuroinflammatory diseases.
What are the treatments for ADEM?
The main goal of treating ADEM is to reduce inflammation in the brain and spinal cord . The following treatments may be used:
- Steroid drugsSteroid medications: The first line of treatment for ADEM is intravenous (IV) steroids. This may be given intravenously for several days. You may then be given oral steroid pills for a few days.
- Intravenous immunoglobulin (IVIG) : This is a treatment that contains antibodies made from donor blood plasma. This is also given into a vein.
- Plasma exchange (or plasmapheresis): This involves taking some of your blood, running it through a machine that removes some of the components that weaken your immune system, and then putting it back into your body. This treatment can take several hours and may be done several times.
Research is continuing to learn more about this condition and find new treatments.
Remember, these treatments are determined by your doctor. He/she will choose what is best for your condition.
Are there any side effects to these treatments?
As with any treatment, some side effects may occur.
Side effects of short-term steroid treatment are usually temporary, but they can include:
- Increased blood sugar levels
- Decreased potassium levels
- Difficulty falling asleep
- Mood changes (irritability, crying, anxiety)
- Weight gain
- Redness of the cheeks
- Feeling a metallic taste in the mouth
Side effects and complications of `IVIG` treatment :
- Allergic reaction
- Infections
- Difficulty breathing
- Blood clots
- Kidney damage
- Headache.
Complications of Plasmapheresis :
- Inconvenience
- Bleeding
- Infections
- Kidney damage
- Insufficient blood supply to a part of the body (`Ischemia`)
Talk to your doctor about these side effects. Most of the time, they can be managed.
How long does it take to recover after treatment?
Most people who are treated for ADEM start to feel better within a few days of treatment . However, depending on the severity of your symptoms, it can take up to six months to fully recover. Very rarely, some people may not fully recover. However, most people recover well.
Is there a way to prevent ADEM?
There is no specific way to prevent ADEM. However, you can reduce your risk by practicing good hygiene habits to avoid viral and bacterial infections (for example, washing your hands frequently and staying away from sick people).
What is the outlook for ADEM? Is it curable?
Most people with ADEM make a complete or near-complete recovery after treatment.. If the inflammation is very severe, it can very rarely be life-threatening. Your doctor can give you the best idea of your situation.
ADEM symptoms usually occur only once , but can recur depending on the underlying cause (such as MOGAD). ADEM usually resolves with treatment, but symptoms can recur. Most people have a normal lifespan.
When should I see a doctor?
If you have symptoms similar to ADEM, especially after an infection , be sure to see a doctor. The earlier it is detected, the sooner treatment can begin.
Important questions to ask your doctor
If you are diagnosed with ADEM, you may want to ask your doctor these questions:
- How should I prepare for the tests?
- What kind of treatment do you recommend?
- What are the side effects of the treatment?
- Will my symptoms persist after treatment?
It's normal to feel anxious and scared when you suddenly experience symptoms like being unable to walk, losing your sight, or having an unexplained seizure. Your medical team will help you cope with this. Some treatments may take a few days or even hours. During this time, read a book or do something that calms you down. Remember, this is a one-time occurrence for most people, but it can happen again.
Brief points to remember
- ADEM is a sudden inflammation of the brain and spinal cord.
- This is very rare and often occurs after an infection.
- It is thought that this happens when our own immune system mistakenly attacks the nervous system.
- Symptoms vary and can include fever, headache , numbness, vision problems, and difficulty walking.
- It is mainly diagnosed through MRI and spinal fluid testing.
- There are treatments like steroids, IVIG, and plasma exchange.
- Most people recover well, but full recovery can take several months.
- Although there is no specific way to prevent it, it is important to protect yourself from infections.
I hope you find this information helpful. If you have any further questions, don't forget to talk to a doctor.
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