Living With Neuromyelitis Optica

Medically Reviewed by Christopher Melinosky, MD on November 29, 2022
4 min read

Neuromyelitis optica (NMO) can affect your vision, your muscles, and your emotions. It sometimes leads to lasting symptoms or disabilities. But certain devices, lifestyle changes, and therapies can help you live with NMO as well as you can.

NMO, also called Devic's disease or NMO spectrum disorder, mostly affects your spinal cord and optic nerves. Optic nerves carry messages from your eyes to your brain. Damage from NMO can cause problems like:

  • Eye pain
  • Blurred vision
  • Problems seeing colors or in dark or bright light
  • Vision loss

Your vision issues may get better after an NMO attack, come and go, or be permanent. They sometimes affect your ability to drive.

Some treatments for NMO also can help reduce or stop vision loss. It may also help you to get:

  • Tools and technology. These range from kitchen gadgets that alert you when a pot of water begins to boil to apps that turn your smartphone into a magnifier. Most smartphones and tablets let you adjust the display so that words are white and the background is black. This may make it easier for you to read. Voice-activated technology can also help with many tasks.
  • Low vision rehabilitation. Occupational therapists and others who specialize in vision problems can teach you how to make the best use of the vision you have. They'll also teach you how to use devices for people with vision problems.

NMO flare-ups can leave you with weakness, numbness, or paralysis in your arms and legs. This sometimes makes it harder for you to walk, work, or do other daily activities. Your doctor might suggest physical or occupational therapy to help you gain better use of your arms and legs.
Therapists can teach you how to use devices like canes and walkers. They can also create personalized physical therapy programs to strengthen and stabilize areas where you’re weak.

You may also feel better if you do:

  • Exercise. Regular exercise can boost energy, strengthen muscles, and help with bladder and bowel problems. It also helps with fatigue, depression, and poor sleep. Always check with your doctor before you start an exercise program.
  • Yoga. This practice helps keep you flexible, relaxes you, improves mood and sleep, and reduces pain. 

NMO sometimes causes painful muscle spasms and stiffness, a condition doctors call spasticity. A physical therapist can show you exercises and use splints, a type of brace, to help you stay flexible and improve movement.

Your doctor may treat your spasticity with:

  • Shots of botulinum toxin. Commonly known as Botox, it relaxes your muscles. The effects last several months. It works best if you have spasticity only in a few muscles.
  • Serial casting. This therapy uses a series of casts to hold your ankle, wrist, or elbow joints in positions that gently extend your range of motion.

When NMO damages your spinal cord, it can affect how well your bowels and bladder work. Constipation is common. You might have incontinence (trouble controlling your bladder and bowels) or have to use the bathroom often or urgently. Your symptoms may get better if you:

  • Eat a high-fiber diet
  • Avoid caffeine and acidic foods like citrus and tomatoes
  • Drink lots of water
  • Get regular exercise 

Your doctor may recommend treatments to ease or prevent these problems. They include:

  • Medicine for incontinence or diarrhea
  • Shots of botulinum toxin for your bladder 
  • Self-catheterization (where you use a catheter to empty your bladder)

People who have NMO might feel fatigued for several reasons. The condition itself is hard on your body. Some medications make you tired. Pain or bowel and bladder problems can also stop you from sleeping well.

Try these tactics to deal with fatigue:

  • Pace yourself. Prioritize the tasks you need to do in a day, and tackle the most important ones first.
  • Tell your boss, co-workers, and family when you're feeling fatigued. This helps you set expectations and allows them to help you. 
  • Get enough sleep. Talk to your doctor if you're having sleep problems.
  • Take rest breaks throughout the day when you need them.
  • Get help with chores like cooking, cleaning, and laundry.

Nerve damage from NMO can lead to pain that feels like burning, tingling, or numbness. Doctors call this "neuropathic pain."

Several medications treat this type of pain. You and your doctor may have to try a few before finding the best one for you.

Heat can trigger pain in people with NMO, so don't get overheated. Your doctor may suggest personal cooling devices like fans or wearable devices. Alternative therapies like acupuncture and meditation may lessen your pain too.

It’s normal to feel sadness and a sense of loss when you have NMO. If these feelings get in the way of your daily life, you may have depression.

Counseling and medications can usually improve depression symptoms, especially if you use both. If you think you're depressed, talk to your doctor. 

NMO is a rare disease, so it's sometimes hard to find others who understand what you're going through. The Guthy Jackson Foundation or Siegel Rare Neuroimmune Association can help you get support.