Meet Your NMOSD Healthcare Dream Team
Yes, neuromyelitis optica spectrum disorder (NMOSD) is serious—but it’s also treatable. An inflammatory condition of the central nervous system, NMOSD affects mainly the optic nerve and spinal cord. Symptoms range from low vision to trouble walking. Treatment for NMOSD “depends on which areas of the nervous system have been affected and what symptoms you’re experiencing,” says Elias Sotirchos, M.D., a neurologist and head of the Johns Hopkins NMO Clinic in Baltimore. These are a few of the specialists who can help with this disorder.
Seeing a neurologist is a no-brainer (bah-dum-dum). “The neurologist is the one who typically prescribes the medication to prevent further attacks, monitors the patient, and adjusts the therapy as needed,” says Dr. Sotirchos. Expect to check in one to four times a year, and undergo a full neurological exam each time. You may be asked to follow a light with your eyes, detect swabs against your skin, move your face (smile, frown, show your teeth), and walk around.
Because NMOSD meds (immunosuppressants) work by tamping down the overactive immune system, your neurologist will also check your bloodwork regularly—often every six months—to make sure immune function is not overly suppressed, says Rebecca Straus Farber M.D., a neurologist with New York-Presbyterian/Columbia University Medical Center. This means you’ll need to get your blood drawn, so you’ll get familiar with who handles your veins best at the lab. All this helps the doc decide if your treatment plan is working or needs to be adjusted.
NMOSD can cause dim or blurred vision, or pain when you move your eye, says Dr. Sotirchos. You’ll want to see an ophthalmologist—or even a neuro-ophthalmologist, who specializes in vision problems related to the nervous system. Your ophthalmologist will check your visual acuity and screen for eye conditions, then give you an optical coherence tomography test, during which a machine takes pictures of your eyes to check for changes in the optic nerve.
Low-Vision Occupational Therapist
If you have severe vision loss, your doctor can refer you to a low-vision occupational therapist—someone who helps you adapt to living with limited eyesight so you can stay active in all the ways you need to. A low-vision OT will evaluate your needs and customize a plan just for you, including ways to modify your home (like changes in lighting) so it’s safer and easier to get around. They can also teach you strategies for making everyday tasks (like cooking or using a computer) easier.
A spinal cord attack can result in weakness, numbness, or “spasticity” (stiffness) in your legs that makes walking difficult. “Often patients need rehabilitation to recover strength and walking ability, or learn how to use adaptive equipment,” says Dr. Sotirchos. You might start this process with a physiatrist, an M.D. specially trained in the mechanics of walking who can also prescribe medications such as muscle relaxants to ease pain and stiffness. Physiatrists work closely with physical therapists in developing rehab plans.
A physical therapist is an expert in movement who can help you stay active and function at your best. If you were referred by a physiatrist, then your PT can help you implement the prescribed exercise program. If not, your PT will evaluate you and recommend exercises that can help—likely a combination of balance, strength, and mobility moves, Dr. Straus Farber says. You may go one or more times a week for weeks or a month, until you’re able to do the exercises on your own, says Dr. Straus Farber.
If you’re having weakness in your arms or hands, you may have trouble buttoning your shirt, writing, typing, or using your phone. An occupational therapist will create a custom plan to help teach you strategies to perform these and other fine motor-skill tasks. Your OT will work with you weekly for a few weeks or months, until you’re ready to implement the strategies and skills you’ve learned on your own, says Dr. Straus Farber.
If the spinal cord is affected, it may disrupt signals to the bladder, resulting in “urge” symptoms like incontinence or feeling like you have to go often or right now. But the opposite can also happen—difficulty urinating or emptying the bladder, laying the groundwork for urinary tract infections. For incontinence, you may be given bladder inhibitors such as anticholinergics, typically in oral tablet form, says Dr. Straus Farber. If those don’t work, your urologist may recommend Botox injections, which help relax the muscles so you have more time to get to the bathroom.
People with NMOSD may experience nerve pain in their arms, legs, or back, depending on which part of the spine is affected. The pain may be a symptom of inflammation and can last weeks to a month. If the inflammation damages the nerve tissue, that damage (which can be permanent) can leave you in pain not just during attacks but all the time—even after the inflammation subsides, Dr. Straus Farber explains. A pain medicine doctor can help you manage the pain with oral medication or injections.
Sometimes people with NMOSD report cognitive symptoms, such as having a hard time concentrating or multitasking. In those cases (which tend to be less common, says Dr. Straus Farber), a neuropsychologist—a psychologist specializing in the brain—will perform a battery of tests to assess mental skills, like concentration, memory, and your ability to think, says Dr. Straus Farber. These tests allow them to pinpoint cognitive deficits so they can then provide strategies to help you compensate.
Primary Care Doctor
While specialists help you with specific symptoms, it’s important to have one person keeping an eye on the big picture, says Dr. Sotirchos. “The primary care doctor is really the quarterback of a patient’s healthcare team,” says Dr. Sotirchos. “Often, the primary care doctor will initiate these referrals, and might be seeing a patient more frequently than the specialists.” Your primary care doc can monitor bloodwork and assess for medication side effects. Plus she or he can screen for comorbidities like hypertension, diabetes, depression.