NMOSD Symptoms: When Not to Worryby Linda Rodgers Health Writer
To understand neuromyelitis optica spectrum disorder (NMOSD), an autoimmune disease, it helps to think of your immune system as a herd of cats roaming around the body, notes Benjamin M. Greenberg, M.D., director at UT Southwestern Medical Center’s Transverse Myelitis and Neuromyelitis Optica program, in Dallas. Like house cats, your immune system is on the lookout for foreign invaders, but instead of mice and bugs, it’s on the prowl for viruses and bacteria. But just like cats can get confused and scratch up the sofa, your immune system can too: “Autoimmune diseases are basically a problem of confused cats,” he says.
In NMOSD, the immune system mistakenly attacks either your optic nerve, brainstem, or your spinal cord, producing inflammation. That damages the pathways, blocking your brain’s ability to communicate. You may lose sight in one eye, say, or the ability to move your leg. Treatment involves putting out the fire, says Dr. Greenberg—“using therapies to dampen the immune system, get inflammation out of the spinal cord and the optic nerve.” This includes high-dose steroids and often, a plasma exchange, where your blood goes through a machine to get rid of the proteins causing inflammation.
Healing That Feels Anything But
Once inflammation subsides, you’ll take meds to suppress your immune system and begin a six-month-plus period of rehabilitation. “The healing process sometimes feels worse than the attack itself, because there's a lot of pain and spasticity,” says Michael Levy, M.D., associate professor of neurology at Massachusetts General Hospital in Boston. The nerves are being rewired, allowing signals to get from the brain to your retina via the optic nerve or to your body via the spinal cord—and they’re a good sign. That's why they're called positive symptoms. Here are some of the most common.
Halos or Light Sensitivity
When your optic nerve was inflamed, you might have lost your sight, had obscured vision, and a lot of pain. The pain usually goes away quickly when the inflammation stops, says Dr. Greenberg, who is also a professor of neurology at UT Southwestern Medical Center.
Positive symptoms include: Halos, sensitivity to glare or light, or poor contrast sensitivity (so driving at night is a problem). Over time, these new symptoms should improve. But if you had a particularly severe attack, you may not regain all the vision you lost.
A Hyperactive Bladder
Sometimes NMOSD leaves you unable to store or pass urine, depending on where the inflammation is along the spinal cord. That’s because the brain could no longer send signals to the bladder, via the spinal cord.
Positive symptoms include: Getting up at night to pee, peeing more often, an urgent need to pee. “Yes, this is much better than [not being able to control your] bladder, but it’s definitely inconvenient and taxing to patients’ lives,” says Maureen Mealy, Ph.D., an adjunct associate professor of neurology at Johns Hopkins University School of Medicine. Botox shots may be prescribed to calm the bladder down.
Depending on where the inflammatory lesions were in the spinal cord, you couldn’t move your legs or arms, or felt no sensation in your limbs.
Positive symptoms include: Strong spasms that make it impossible to, say, straighten out your arm if your elbow flexes up, Mealy explains. These spasms come and go, but you might have 10 in an hour, with each one lasting a few seconds to a minute. Your muscles are regaining tone, and again, it doesn’t feel great, but it is. Physical therapy can help.
“When inflammation damages the spinal cord there’s a disruption to the transmission of those nerve impulses,” says Mealy, who was the program manager at Johns Hopkins’s Transverse Myelitis Center. “So when patients experience pain, it actually means that the signaling is now getting across.”
Positive symptoms include: Constant stabbing pain, feeling like you’re on fire when something touches you, or constant tingling. Of course, this doesn’t feel positive at all—and pain is the number one complaint. A combination of medications, like anti-depressants, along with yoga, biofeedback, and electrical stimulation can ease these symptoms.
Expect Many Tough Days
“The healing process is not a straight line. It's up and down, and it might depend on things as benign as when it’s really hot or cold outside,” Dr. Levy explains. Because healing can feel so bad, people think they’re getting worse, but for the most part that was from the damage that was already done. It’s time to call the doctor if you suddenly go blind in your other eye or the eye that was healing, or you feel numb or weak in a different part of your body (like a leg if the eyes were involved). Those may be signs of a new attack, says Mealy.
Help Recovery Along
“The body itself is pretty remarkable at going into autopilot to heal, so a lot of that happens passively,” says Mealy. But staying physically active, whether it’s walking, doing tai chi, or physical therapy, can promote healing. Eating an anti-inflammatory diet (good fats, lots of fish, fruits, and vegetables) may also, though the evidence is anecdotal. And there’s some limited data specific to NMODS that taking vitamin D supplements plays a key role in immune health, notes Mealy. How much to take? A doctor will base that on how low your levels are—and monitor so you don’t overdo.