About 200 new cases of multiple sclerosis are diagnosed every week in the United States. If you’re one of them, it’s natural to feel confused or anxious about your next step. Most MS experts agree the road to take is the one leading to a neurologist who specializes in the treatment of multiple sclerosis.
“Your best bet is to choose a doctor who is a master of their trade and not just dabbling in the disease. You want a specialist who has treated thousands of MS patients, not just hundreds,” says Dr. Annette Okai, a neurologist who specializes in MS at Baylor University Medical Center in Dallas.
Plenty of experience and a wealth of knowledge matters, especially with MS, because it’s such a complex condition. MS is an autoimmune disease in which the body’s immune system overreacts and damages myelin, the covering that protects nerve fibers around the brain and spinal cord. This hyper-reaction causes problems in other areas of the body and can result in vision issues, imbalance, muscle weakness and spasticity, pain, brain fog, extreme fatigue and heat sensitivity, among others issues. “Picking up on the nuances of the disease is extremely important. What might help one MS sufferer won’t necessarily treat the symptom of another patient,” Okai says. “Specialists are more likely to tune into even the subtlest symptoms.”
A pattern of diverse symptoms is one reason why MS is often misdiagnosed from the get-go, and the error can swing either way, especially if the doctor is less experienced with the disease. “Just because you have some symptoms of MS, it doesn’t mean you have the disease,” says Dr. Teresa Kaldis, assistant professor of clinical medicine, Neurological Institute at Houston Methodist.
A number of common conditions are frequently mistaken for multiple sclerosis, according to a study published online August 31, 2016, in the journal Neurology. And misdiagnosis can have serious consequences. For example, researchers found that 72 percent of the misdiagnosed patients took medication to treat MS when they didn’t have the disease, and 33 percent had remained misdiagnosed for a decade or longer.
“To avoid misdiagnosis and receiving the wrong treatment, it’s important to see someone who has the expertise to make an early diagnosis and be able to target symptoms with the correct treatment,” Okai says. A 2013 study reported in the American Journal Management Care found that the earlier the treatment, the better the prognosis for MS patients. “A specialist is more likely to get you the best treatment at the start of your disease symptoms,” Okai says.
Need more convincing? A June 2016 commentary in the Multiple Sclerosis Journal looked at the pros and cons of specialist care for patients with MS. The result? There was overwhelming support for the use of specialist care.
But what if you live in a small town where the nearest specialist or MS clinic is hours away from your home? “It’s worth it if you live in a rural area to make a trip at least once or twice a year to a major MS clinic where you can get a thorough check-up and your personal treatment plan,” Okai says. “From then on, your local neurologist will be able to stay in communication with your specialist.”
Tips for choosing the right specialist:
- “Look for a neurologist who is fellowship-trained, specifically in MS. This means additional education over the course of one or two years,” Okai says.
- “If possible, find a specialist who is active in research or clinical trails, or at least is aware of the ones taking place,” Kaldis says. “New treatments are developing very quickly, and you want a specialist who is on top of the latest research.”
- “Ask yourself: ‘Do I feel confident this specialist really understands my particular symptoms, is listening to me and is offering individualized treatment, including complementary therapies?’” suggests Okai.
- “How easy is it to work with the office staff to get a message to the specialist?” Kaldis asks. “You want to be able to reach your doctor within a reasonable time.”
Ideally, you’ll be able to visit a large enough MS clinic where no matter what your symptom, there will be a doctor available who can treat it right there. “Look for a center that’s like one-stop shopping,” Kaldis suggests. “So if you’re experiencing emotional problems like depression, there’s a psychologist or psychiatrist in the clinic. Bladder issues? A urologist. Or if you’re having problems with walking or balance, you can see a physical therapist.”
There are approximately 70 MS clinics in the United States. You can find these clinics, as well as a list of neurologists who specialize in multiple sclerosis, in a directory that’s maintained by the Consortium of MS Centers.
You’ll also want to know if the specialist you’re interested in seeing is included in your insurance plan.
Don’t be discouraged if you can’t find your perfect fit right away. Like most relationships in life, it may be a process of trial and error before you meet your match.