Are you feeling like your eyesight and body are failing? Let's talk about Neuromyelitis Optica (NMO)!

Do you sometimes suddenly notice a change in your vision, or feel like some parts of your body are numb or lifeless? Maybe your eyes hurt, or you find it difficult to walk? There could be one reason for these things, and today we are going to talk about a disease that is a little rare, but very important for us all to be aware of. That is neuromyelitis optica, or we call it `(NMO)` for short.

What is Neuromyelitis Optica?

Simply put, Neuromyelitis Optica (NMO) is a long-term, chronic condition. It mainly affects your vision and ability to move your body. Imagine that our body's own defense system, the immune system, mistakenly starts attacking parts of our own nervous system. That's what we call an autoimmune disorder. So, NMO is one such disease.

This disease has been called by various names over time. It was originally called Devic's disease, after the French neurologist Eugene Devic, who first described it. However, in 2015, an international team of experts named it Neuromyelitis Optica Spectrum Disorder (NMOSD). However, most doctors and others still refer to it as NMO.

In the past, experts thought that NMO was a rare variant of multiple sclerosis (MS). However, it is now clear that it is a separate, independent condition from MS .

Who is more likely to develop neuromyelitis optica (NMO)?

This condition is more common in women. Roughly speaking, 80% to 90% of patients are women. It usually affects people between the ages of 30 and 40. It is very rare for young children to develop NMO, which means only a small number, about 5% of all patients.

Although people of any race or ethnicity can develop NMO, it does not affect everyone in the same way. People of African descent, especially those of Afro-Caribbean descent, are at higher risk. It can also affect people of Asian descent.

How common is this condition called `(NMO)`?

In fact, NMO is a very rare disease. It usually affects between 0.3 and 4.4 per 100,000 people. That means there could be between 24,000 and 350,600 patients worldwide.

How does this `(NMO)` affect my body?

To understand how NMO affects you, it's helpful to have a little understanding of our nervous system. Our nervous system is made up of the brain and spinal cord. In fact, even the optic nerves that help us see are part of the brain.

When we take the brain and spinal cord together, we call it the central nervous system. Then, the network of nerves that extends throughout the body is called the peripheral nervous system.

Our nervous system carries information to and from the brain. This is done through chemical and electrical signals. These signals travel through specialized cells called neurons.

The most important part of every neuron is the axon. This is like an arm of the neuron. Electrical signals are carried along this axon. At the end of the axon are parts called synapses. This is where electrical signals become chemical signals. These synapses are where the neuron connects and communicates with other neurons.

Around this axon is a thin, protective sheath called myelin. This is made up of fatty chemical compounds. The myelin sheath helps electrical signals travel along the axon and prevents damage to the axon. (NMO) is a demyelinating disease that damages the myelin sheath. This is similar to how the plastic sheath on an electrical wire can be damaged if you remove it. When the myelin sheath is removed, the axon can easily be damaged.

The damage caused by NMO mainly affects neurons in two specific locations:

1. The optic nerve, which connects your eyes to your brain.

2. Your spinal cord. This is the main center where nerve signals are collected before they reach the brain.

NMO can affect multiple levels of the spinal cord. This can affect all the nerves that connect below the affected spinal cord.

What are the symptoms of neuromyelitis optica (NMO)?

NMO symptoms occur in the form of "attacks." This means that symptoms come on suddenly, last for a short time, and then go away. These attacks can last from a few days to months. These attacks are often severe, and can sometimes cause permanent damage. In this case, the effects may be permanent even after the attack is over.

The symptoms of NMO can be divided into three main categories:

• Optic neuritis: These symptoms are caused by swelling (inflammation) of the optic nerve in one or both of your eyes.
• Myelitis: These symptoms are caused by swelling (inflammation) of the spinal cord.
• Brain function disruptions: These occur when NMO affects your hypothalamus or brainstem. These are the main parts of our body that control automatic processes.

Optic neuritis

Our eyes take in the light around us and send signals to the brain via the optic nerve. The brain processes those signals and gives us vision.

In optic neuritis, the optic nerve swells. Since there is not much space in that part of the head, this swelling can put a lot of pressure on the optic nerve. Think about it, when we squeeze an arm or leg, it feels numb and hurts. That's what happens when there is pressure on the optic nerve.

Symptoms of optic neuritis can affect one or both eyes. Sometimes one eye can be affected first, then the other, or both eyes can be affected at the same time. Symptoms include:

• Eye pain: This pain may increase, especially when moving the eyes.
• Blurred vision: This can increase when you are tired.
• Partial or complete loss of vision: You may lose all or part of your vision in one eye (for example, you may lose the center of what you are looking at). You may also have blurred vision or a loss of color vision.
• Difficulty seeing in low light: This can make it difficult to do things like drive at night.

Myelitis

Myelitis is an inflammation of your spinal cord. This inflammation can put pressure on the spinal cord and the nearby spinal nerves. This can cause partial or complete blockage of nerve signals. When all types of nerve signals are blocked, it is called transverse myelitis.

Symptoms of myelitis depend on where the swelling is and which parts of the spinal cord or spinal nerves are affected. If the swelling puts pressure on the spinal nerves, symptoms will occur in the parts of the body that connect those nerves to the brain. If the spinal cord is compressed, symptoms will occur in all parts of the body that are connected to the spinal nerves below the point of compression.

Symptoms of myelitis are:

• Muscle weakness or paralysis: This affects the parts of the body below the affected area of ​​the spinal cord. You may lose control of your limbs, making it difficult to walk or stand. If myelitis occurs in the cervical spinal cord, even the breathing muscles may become paralyzed, which can be fatal.
• Spasticity: This occurs when the muscles lose control signals from the brain and start acting on their own. The muscles then become uncontrollably stiff and twitch.
• Pain: Myelitis can cause pain due to pressure on the spinal cord. Pain may be caused by the swelling itself, or it may be caused by the affected nerves sending pain signals incorrectly.
• Incontinence: Myelitis can disrupt the nerve signals that control bowel and bladder function, resulting in urinary incontinence or bowel incontinence.
• Sexual dysfunction: Myelitis can interfere with nerve signals that control sexual function or organs.

Disturbances in brain function

While it is common to see changes in the brain in multiple sclerosis (MS), it is rare in NMO. However, when they do occur, the way the brain controls some of the body's processes can be disrupted. If these disruptions occur in the hypothalamus or brainstem, they can cause serious, even fatal, problems.

The brainstem is the lowest part of the brain. It's located at the back of the head, at the bottom. This part is very important. Because it connects the brain to the spinal cord, it also controls automatic processes. Automatic processes are things that happen without us thinking about them - things like breathing, blood pressure, sweating.

If NMO affects the brainstem, symptoms such as:

• Unstoppable hiccups.
• Unstoppable itching (pruritus).
• Nausea and vomiting for no apparent reason.
• Hearing loss.
• Seeing two things at once (diplopia), uncontrolled eye movements (nystagmus), or other problems with eye control.
• Facial palsy.
• Dizziness or a feeling of spinning (vertigo).
• Problems with body balance or coordination (ataxia).
• Facial nerve pain (trigeminal neuralgia).

The hypothalamus is located just above the brainstem. It also controls the body's automatic processes. If it is affected by NMO, other systems in the body can also malfunction. For example, NMO can cause symptoms of narcolepsy (excessive daytime sleepiness).

What causes neuromyelitis optica (NMO)?

Experts still can't fully explain how and why NMO develops. The currently known or suspected causes are:

• Malfunction of the immune system.
• Other autoimmune or inflammatory conditions.

Immune system malfunction

NMO is an autoimmune disease. This means that our own immune system mistakenly attacks a part of our own body. In this case, it attacks our optic nerves and/or spinal cord.

There are currently two known autoimmune forms of NMO:

• Aquaporin-4 (AQP4) antibodies: AQP4 is a protein found on the surface of some cells in the nervous system. Its job is to move water in and out of cells. AQP4 antibodies mistakenly tell the immune system to attack this protein. This then damages the cells that contain this protein. More than 80% of people with NMO have AQP4 antibodies in their blood.
• Myelin Oligodendrocyte Glycoprotein (MOG) antibodies: MOG is a protein that helps build and maintain the myelin sheath around neurons. MOG antibodies mistakenly tell the immune system to attack this protein, which then disrupts the myelin sheath around neurons. About 6.5% of people with NMO have this antibody in their blood.

This immune system malfunction often occurs for reasons we don't know. However, some data suggests that this malfunction may occur after an infection. Between 15% and 35% of people who develop NMO have had an infection before they develop symptoms of NMO. However, further research is needed to confirm this.

Experts currently do not know why people who do not have antibodies to either `(AQP4)` or `(MOG)` (which is about 13.5% of people with the disease) develop `(NMO).` Such cases are classified as `(idiopathic)`.

Also, some experts believe that ``(MOG)`` antibody-related ``(NMO)`` is actually a separate disease. However, more research is needed on this, and it has not yet been officially recognized as a separate disease.

Other autoimmune or inflammatory conditions

Although NMO can occur on its own, it is more likely to occur in people who have other autoimmune or inflammatory conditions. However, more research is needed to determine whether these conditions cause or contribute to NMO.

Such situations are:

• Lupus `(Lupus - systemic lupus erythematosus)`
• Celiac disease
• Sjögren's syndrome
• Sarcoidosis
• Myasthenia gravis
• Antiphospholipid syndrome

Genetic factors

Experts suspect that genetic factors may also play a role in NMO. One reason is that the disease is more common in certain ethnic groups. Another is that about 3% of NMO patients run in the same family. Although there is no evidence that NMO is a hereditary disease, there may be genetic factors that make NMO more likely to develop.

Is neuromyelitis optica (NMO) contagious from person to person?

Currently, there is no evidence that NMOSD or NMO can be transmitted from person to person.

How is neuromyelitis optica (NMO) diagnosed?

The most important difference between multiple sclerosis (MS) and NMO is that certain tests can confirm whether someone has NMO. A doctor may use a combination of the following to diagnose NMO:

• Blood tests: One of the most important tools doctors have to diagnose NMO is to check your blood for antibodies to AQP4 or MOG. Although a blood test cannot always confirm NMO (because about 13.5% of cases have no detectable antibodies), it is very useful in making a diagnosis.
• Magnetic Resonance Imaging (MRI) Scan: An MRI scan is especially helpful in diagnosing NMO. This condition causes changes in your spine and other parts of your central nervous system that can be detected on an MRI scan. These can be clearly distinguished from the changes usually seen in MS, so doctors can confirm that it is not MS.
• Physical and neurological exams: These tests look for signs and symptoms that may be caused by NMO. The neurological exam is especially important because it can identify problems with your senses, reflexes, muscle movements, balance, and facial functions.
• Personal and medical history: In this, the doctor will ask you questions about your health, symptoms, and details of your personal and medical history.

Other tests may also be done, as your doctor may feel it is important to rule out other medical conditions. Your doctor can tell you more about the tests he or she recommends and why they are recommended.

How is neuromyelitis optica (NMO) treated? Is there a cure?

NMO cannot be cured completely. However, thanks to ongoing research, the condition can be treated. Because NMO is an autoimmune disease, there are two main treatment options: acute treatment and long-term management.

• Acute treatment: This focuses on treating the immediate effects of an NMO attack, especially the swelling. This is most often done with corticosteroids (or other types of medication that reduce swelling as prescribed by a doctor). Acute treatment is very important because it reduces the risk of permanent damage from an attack.
• Long-term management: NMO is caused by your immune system mistakenly attacking your nervous system. Managing it means suppressing or modifying your immune system. This reduces the ability of your immune system to damage your nervous system. This can help prevent NMO attacks, or at least limit how severe they are and how long they last. Experts recommend this treatment for both people with and without AQP4 antibodies.

What kind of medication or treatment is used?

There are several medications and treatments that can help treat NMO:

• Anti-inflammatory drugs: These drugs reduce inflammation in your nervous system. The most common medication used for this is a corticosteroid like prednisone. Doctors usually start these drugs intravenously (IV). They are given while you are in the hospital. After you leave the hospital, your doctor may switch you to a similar medication that you take by mouth.
• Plasma exchange (plasmapheresis): If steroids don't help, your doctor may recommend a procedure called plasma exchange. This involves removing the plasma from your blood and replacing it with plasma from a matched donor. By removing some of your plasma and replacing it with donor plasma, some of the immune cells and chemical markers (which strengthen the immune response) in the plasma are removed. This reduces your body's immune response and reduces swelling.
• Intravenous Immunoglobulin (IVIG): This procedure involves injecting plasma into your body through an IV. The plasma you receive contains immunoglobulins. That is, plasma that contains antibodies from donors. These do not attack your nervous system like your own immune system does.
• Immunosuppressants: These are medications you need to take regularly. Some are given intravenously (IV), which is done in an infusion clinic or similar medical facility. Others come as pills, which you can take at home. Many people need to take these pills for years, sometimes their entire lives.

What are the side effects or complications of the treatment?

The side effects of treatments depend on many things, including the drug, the severity of your condition, and your medical history. However, one side effect of immunosuppressant drugs stands out: they reduce your immune response.

Your immune system protects you from foreign invaders like viruses, bacteria, fungi, and parasites. It also keeps cells from misbehaving. If your body's cells are misbehaving, the immune system's job is to intervene and destroy them (cancer is when cells misbehave, hide from the immune system, and multiply uncontrollably).

Although taking immunosuppressant drugs can help prevent attacks of NMO, they can also make your body less able to fight off certain infections. They can also increase your risk of developing certain types of tumors (cancerous and noncancerous). If you are taking immunosuppressant drugs, you should take certain precautions to reduce your risk of getting sick. You may also need to get vaccinated against infectious diseases such as COVID-19, influenza (flu), and pneumonia, which can be serious and even fatal when your immune system is weakened.

How soon will I feel better after treatment? How long will it take to recover from treatment?

The treatment and recovery schedule for NMO can vary, as many factors influence this. Your doctor is the best source of information about this. He or she can tell you what the most likely timeline is in your area, and what you can do to help with the process.

What should I expect if I have neuromyelitis optica (NMO)?

If you have NMO, you can expect this condition to start without much warning. Some people have a respiratory infection or other illness before it develops, but that happens in about a third (or even fewer) of cases.

NMO attacks cause vision problems because they affect your optic nerves. They can cause eye pain and blurred vision. They usually get worse over a few days or weeks and then peak. If the optic nerves are severely damaged, these symptoms can be permanent, but treatment can help prevent permanent damage.

NMO affects the lower part of your brain - the brain stem - and your spinal cord. It can cause your body's automatic processes to malfunction, causing things like nausea, vomiting, and uncontrollable hiccups.

If myelitis becomes severe, the pressure on the spinal cord can disrupt nerve signals to the affected area or all parts of the body below it. This can cause muscle weakness, paralysis, and loss of sensation below the affected area. This can be serious if the muscles that control breathing are affected, causing paralysis or muscle weakness. Early treatment can prevent these effects from becoming permanent.

(NMO) is an autoimmune disease. This means that it occurs when your immune system mistakenly attacks parts of your own body. In this case, your immune system targets your nervous system. Treatment for this condition usually involves suppressing your immune system for a long time. Unfortunately, this can make you more susceptible to infections as a side effect. People taking immunosuppressant medications need to take precautions to reduce their risk of getting sick.

How long does neuromyelitis optica (NMO) last?

NMO causes attacks, meaning symptoms appear suddenly. For people who have antibodies to either AQP4 or MOG, NMO is a lifelong condition. Currently, people with the disease must take immunosuppressive drugs for years, sometimes for the rest of their lives, to prevent attacks.

Between 10% and 20% of people with NMO have only one attack and never have another. This is more likely to happen in people who do not have antibodies to either AQP4 or MOG. However, there is no way to know for sure, so your doctor may recommend taking these medications to reduce your risk of having an attack.

What is the future outlook for neuromyelitis optica (NMO)?

In the past, NMO was a disease with a very poor prognosis. However, thanks to discoveries about the immune origin of the disease, experts now know that NMO is a treatable condition. Medications that manage the condition reduce the rate of relapse by between 72% and 88%. The five-year survival rate with this condition is between 91% and 98%.

People with NMO who experience multiple attacks are more likely to lose some abilities, such as vision and movement. About 22% of people recover completely from the effects of NMO and regain all of their abilities. About 7% do not recover at all. The remaining 71% recover at least partially, but may experience ongoing effects.

How can I reduce the risk of developing neuromyelitis optica (NMO)? Can it be prevented?

NMO occurs unexpectedly and for reasons that doctors still don't fully understand. Therefore, there is no way to prevent it or reduce the risk of developing it.

How do I take care of myself?

NMO is a manageable condition. Your doctor will guide you on how to take care of yourself. Some of the most important things you can do are:

• Take your medication correctly: Whether you are recovering from an NMO attack or have gone a long time without an attack, it is important to take your medication as prescribed. Medications can help prevent or reduce the damage caused by a current attack and reduce the risk of future attacks. Do not stop taking this medication without talking to your doctor.
• See your doctor as recommended: It is very important to see your doctor regularly if you have NMO. This will allow your doctor to monitor the effects of the condition. It is common to have regular blood tests if you have NMO. This will allow your doctor to see how well your immune system is working. Your medication(s) can then be changed if necessary.
• Take precautions to stay healthy: If you take immunosuppressant medications, they can reduce your immune system's ability to attack your nervous system. Unfortunately, they can also reduce your immune system's ability to fight off infections like colds, flu, COVID-19, pneumonia, and urinary tract infections (UTIs). Wash your hands often (with soap and water or an alcohol-based hand sanitizer). Depending on your overall risk, your doctor may recommend wearing a mask in public or taking other precautions.

When should I call my doctor?

People taking immunosuppressant medications are at increased risk of getting sick from even common infections, even those that are not usually serious. If someone taking immunosuppressants has any of these symptoms, they should call their doctor:

• Extreme fatigue (feeling unusually tired or exhausted) or weakness.
• Nausea and vomiting.
• Unexpected weight changes.
• Urinating more often than usual, lower back pain, or pain or burning when urinating (these are signs of a urinary tract infection).
• Symptoms of upper respiratory tract infections, such as coughing, sneezing, runny nose, or sore throat.
• Other signs of infection, such as fever, chills, and muscle aches.

What is the difference between neuromyelitis optica `(NMO)` and multiple sclerosis `(MS)`?

NMO and multiple sclerosis (MS) are conditions that have many similarities and overlapping symptoms. For years, experts mistakenly thought that NMO was a type of MS. But researchers now know that they are separate conditions.

The main difference between `(NMO)` and `(MS)` is that laboratory tests can help identify the antibodies that cause `(NMO)` (although antibodies cannot always be detected). The treatments for `(NMO)` and `(MS)` are also different, and some treatments for `(MS)` can make the symptoms of `(NMO)` worse.

Simply put, Neuromyelitis Optica (NMO) is a rare, long-term disease. It occurs when your own immune system attacks specific parts of your central nervous system. It was once thought to be a rare form of multiple sclerosis (MS), but it is now recognized as a separate disease. Unlike MS, most cases of NMO can be confirmed with lab tests. This allows doctors to diagnose and treat it quickly.

The most important thing to remember (Take-Home Message)

So, while neuromyelitis optica (NMO) may seem like a scary word, you should remember that there are good treatments for it now . Unlike in the past, there is a lot more information about this disease now, so it is important to see a doctor as soon as you start to experience symptoms and get a proper diagnosis.

• If you experience sudden changes in vision, numbness, or weakness, don't ignore it. See a doctor immediately.
• `(NMO)` is not `(MS)`. The treatments for the two are different. Therefore, an accurate diagnosis is very important.
• Current treatments can control NMO attacks and reduce the risk of future attacks. It is important to take the medication exactly as prescribed by your doctor.
• When taking medications that suppress the immune system, take special care to protect yourself from infections.

I hope this information is helpful to you. If you have any further questions about this, don't hesitate to ask your doctor or midwife. Stay healthy!

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