Because NMOSD is such a rare condition, you may find yourself searching through Google to learn more about it. Doing your own research is good, but what you read may not always be accurate. Here is your guide to what’s real and what’s not when it comes to living with NMOSD.
Fact: NMOSD is not MS
Although NMOSD and MS have several similarities, they also differ in significant ways. This includes specific symptoms, how the disease progresses, and what treatments work best.
RELATED: This Disease Acts and Feels Like MS, How Do You Tell The Difference?
Fiction: NMOSD is a progressive condition
As mentioned above, NMOSD differs from MS in multiple ways. One of those ways is that, unlike MS, NMOSD symptoms do not typically “progress.” So what exactly is it like to live with NMOSD? You will experience isolated attacks of severe nervous system inflammation that can happen at any time. In order to help you combat the lack of predictability, doctors will treat you as if your attacks are recurrent.
Fact: Attacks can leave lasting damage
NMOSD attacks, which usually affect the optic nerve, spinal cord, or part of the brainstem, can cause severe assaults that can lead to vision loss or impairment (often in one eye), extreme weakness in the arms or legs, paralysis, loss of bladder control, and painful itching or spasms.
Myth: Vision loss is always temporary
The nerves connecting your eyes to your brain are one of the most common targets of NMOSD. If these nerves become inflamed (optic neuritis), it can cause painful loss of vision, blurry spots, and a decreased ability to distinguish colors in one or both eyes. Many people who experience this won’t make a full recovery to normal vision, especially without treatment.
Fact: Vomiting and hiccups are symptoms
NMOSD damages part of the brainstem (the back of the brain that continues down into the spinal cord) that controls these involuntary reflexes. Vomiting and hiccups typically occur in the first attack, or in the beginning stages of the disease.
Myth: The cause of NMOSD is a mystery
About 75% of people with NMOSD make an antibody against a protein called aquaporin-4 (AQP4), which helps transport water in the cells of the body. When these antibodies attack AQP4 in the brain, spinal cord, and optic nerves, it results in inflammation, which then triggers symptoms of NMOSD.
If you fall in the other 25% of people who don’t test positive for the antibody, experts believe there are other antibodies that may cause NMOSD, including one for a protein called myelin oligodendrocyte glycoprotein (MOG) that helps protect the nerves.
Fact: Spinal cord inflammation is common
This is true. In fact, it’s one of the ways doctors distinguish NMOSD from MS. Damage from NMOSD usually extends over at least three vertebrae (a good chunk of the spinal cord), which may cause you to experience severe symptoms.
Weakness and numbness, paralysis of the limbs (loss of both movement and sensation), or loss of bladder control during an attack can also happen depending on where the damage occurs.
RELATED: NMOSD: Life After Diagnosis
Myth: NMOSD is an isolated disease
Unlike MS, many patients with NMOSD may also have other autoimmune conditions such as myasthenia gravis, systemic lupus erythematosus, Sjögren syndrome, or Celiac disease.
Fact: Effective treatments exist
The good news is that over the past few years, NMOSD-specific drugs have become available to reduce the risk of future attacks making this once fatal condition highly manageable.
To treat an attack, your doctor will give you high doses of steroids, while using immunosuppressants to manage the situation longer term.
Although NMOSD is a rare and challenging disease, progress has made it possible for those diagnosed to live healthy and active lives. If you suspect that you may have NMOSD, consult with your doctor.