What Is Neuromyelitis Optica?
Neuromyelitis optica, or NMO, is a rare disease that mostly affects your eyes and spinal cord. It’s also known as Devic's disease.
NMO happens when your body’s immune system attacks healthy cells in your central nervous system by mistake. In addition to your optic nerves and spinal cord, it can sometimes attack brain cells.
NMO may be confused with multiple sclerosis. But MS is different. The two diseases have similar symptoms, but the symptoms are usually more severe with NMO.
There are two types of neuromyelitis optica:
Relapsing. This is the most common form. Attacks can be months or years apart. Symptoms go away between episodes. It's more common in women.
Monophasic. In this form, you have a single attack that can last several months. This type affects men and women equally.
Causes
Doctors aren’t sure what causes NMO. Many experts think that it's due to the immune system’s attack on a protein in your central nervous system called aquaporin-4. If you have NMO, your immune system can’t tell the difference between healthy cells and foreign materials, so it attacks both.
Symptoms
Things you can have with NMO include:
- Inflammation of your optic nerve, which can cause problems with your sight, including vision loss and eye pain
- Weakness, numbness, or paralysis in your arms or legs
- Trouble controlling your bladder or bowels
- Painful muscle spasms
- Uncontrollable vomiting and hiccups
- Confusion or seizures (in children)
Getting a Diagnosis
Your doctor will do a physical exam and perform some tests to figure out if you have NMO. The tests you might have include:
Neurological exam. Your doctor will look at your optic nerve. They'll also check your movement, muscle strength, coordination, sensation, memory, thinking, vision, and speech.
MRI. This uses a large magnet to make a detailed image of your brain, optic nerves, and spinal cord.
Spinal tap. Your doctor will put a small needle in your lower back to get a sample of fluid from your spine. Doctors will test for levels of immune cells, proteins, and antibodies in the fluid.
Blood tests. These look for antibodies in your blood to see if you have NMO, MS, or other conditions.
Evoked potentials. This measures how well your eye responds to things like light and images. Electrodes are placed on the back of your head and possibly your neck, back, arms, legs, or earlobes. The doctor gets the results through equipment attached to the electrodes. This can let them know if you have damaged areas in your optic nerve, brain, brainstem, nerves, or spinal cord.
Optical coherence tomography (OCT): Your eyes are scanned by a machine that uses light waves to take pictures of your retina. This will help the doctor see any changes to the fibers of your optic nerve.
Questions for Your Doctor
To stay on top of your diagnosis and treatment, be sure to ask your doctor lots of questions like:
- Do you think I have NMO?
- Which tests will I get to find out if I have it?
- What treatments do you suggest? How will they help me? What side effects might I have?
- Are there any clinical trials available?
- What can I expect with my condition?
Treatment
There’s no cure for NMO, but there are medicines and other treatments that can help ease your symptoms, including:
Drugs to prevent attacks. There are three drugs to treat NMO. Eculizumab (Soliris) inebilizumab-cdon (Uplizna), and satralizumab-mwge (Enspryng) work by targeting the defective antibodies that attack the healthy cells in your body, triggering NMO. Your doctor may prescribe you other drugs, such as rituximab, to suppress your immune system.
Plasma exchange. This removes harmful proteins from the blood. A machine separates the different parts of your blood, then your plasma is replaced with a substitute. After that, the new blood is put back into your body. It’s often the first or second treatment that you'll get during an attack, along with IV steroids.
Steroids. Your doctor will likely give you these if you're having an acute attack. You'll get them into a vein in your arm through an IV.
Taking Care of Yourself
It’s important to eat a healthy, well-balanced diet when you have NMO. Your body works best when it has all the nutrients it needs. Eating well also helps your medications and treatments work.
What to Expect
It’s likely that you'll have a little more weakness or damage to your body with each attack. This may include changes in your arms and legs or problems with your vision. In rare cases, some people with NMO need a ventilator to breathe.
Taking medication to prevent attacks can help lower your chance of symptoms and permanent damage. Talk with your doctor about which meds may work best for you.
Getting Support
Because your symptoms will probably get worse over time, it’s key to build a support system that includes:
- Friends
- Family members
- Support groups
- Health care workers
Don’t be afraid to ask for help. Your doctor can help you find the assistance you need.