What is Neuromyelitis Optica Spectrum Disorder?
Neuromyelitis optica spectrum disorder (NMOSD) impacts the spinal cord, brainstem, and the eye (optic) nerve.
If you have NMOSD your ability to walk, move, talk, and see will be limited in some way. The disorder is like multiple sclerosis (MS) in its early stages.
NMOSD is also referred to as other names such as:
- Devic’s disorder
- Optic neuromyelitis
- Neuromyelitis Optica (NMO)
The disorder was identified about a century ago, by a French neurologist, named Eugene Devic, and his doctoral student, Ferdinand Gault.
In the early days it was believed the NMOSD was a form of MS. However, Devic and Gault proved through patient observation that NMOSD and MS are two separate conditions.
Your doctor can make the distinction between the two disorders by running diagnostic tests.
Symptoms of NMOSD can include the following:
- Inability to see color
- Blurring or loss of vision in one or both eyes
- Not able to sense things when touching objects
- Weakness of a limb or limbs
- Feeling nauseous all the time (without seeming cause)
- Vomiting often (without seeming cause)
- Hiccups that never seem to go away
- Loss of motor function of a limb or limbs
- Bladder retention (inability to urinate or having to go after emptying the bladder)
- Not being able to control bladder or bowel
The cause of NMOSD is currently unknown. Researchers have observed that NMOSD sometimes occurs after an infection.
The condition can also show up in the presence of other disorders which also attack the body.
Prevalence of Neuromyelitis Optica Spectrum Disorder
About 4,000 people have the disorder in the United States. It is estimated that a quarter million people have this disorder worldwide. Women are more likely to be diagnosed with NMOSD than men. About 80%, or four out of five people with NMOSD, are women.
NMOSD can affect people of all ages, but the typical patient is between 40 and 50 years old.
Getting a Diagnosis
There are several tests available to confirm if you have NMOSD. Your doctor will decide which tests are best suited to your situation. You will likely receive one of the following:
Blood tests: Your blood will be checked to see if you have specific substances in your system due to the presence of NMOSD.
Spinal tap: A minor amount of fluid will be removed from your spine. This is to check levels of specific substances. The test will also assist in confirming whether your disorder is NMOSD or MS.
Feedback examination: Your body’s ability to perform specific tasks will be examined. The doctor will observe how you move and respond to everyday activities.
MRI: Your doctor will request this test to get a detailed view of your brain, spinal cord and eye nerves. This test is usually done to check for damaged areas in those parts of your body.
Currently, there is no known cure for this disorder.
The goal of treatment is to prevent attacks. This is important because an attack can cause damage to regions of the spinal cord and/or the eye nerves. Each attack leaves some type of damage, which will affect the function of that area in some way. Medication can help prevent attacks from occurring.
There are several medications available for the prevention of an attack. Your doctor will be helpful in selecting the best choice based on your current condition. The names of some of these medications are: Prednisone, Rituxan, and Methotrexate.
There are usually two approaches to an attack in progress.
The first approach is to administer medication as quickly and efficiently as possible to minimize damage to the spinal cord, brainstem, and eye nerve.
If a patient is experiencing an NMOSD attack, the medication is administered through a vein (intravenously). The medication used for this purpose is usually a high-dose corticosteroid (a steroid to help the immune system), typically methylprednisolone.
If the first approach has no effect, then a second approach is taken.
This second approach involves a plasma exchange and is known as PLEX. The goal of this PLEX treatment is to reduce the amount of a specific substance in your blood. The reduction of this substance will stop the attack.
A PLEX treatment usually takes several hours and involves several steps. In a nutshell, this process involves the removal of your blood and making a change to it. Your blood is then put back into your body. This treatment can be done several times over several days as needed.
Ways to Cope with NMOSD At Home
If you have any questions about the disorder talk to your doctor. Keep a notebook or a smartphone file to keep track of your questions and any information that you want to remember.
If you or a family member are experiencing this disorder, consider joining an NMOSD support group for additional resources and emotional support.
Clinical studies have shown that slow movement like Tai Chi shows measurable benefits like balance, lower blood pressure, and cardio benefits. Keeping a journal of your feelings as you go through this journey can help you process your situation