It strikes while you’re young, sometimes in childhood but more often while you’re in your mid-20s, just as you are launching a career, getting married, or building a family. Long the bane of the medical community, multiple sclerosis (MS), a pernicious, progressive disease of the central nervous system that disrupts communication between the brain and the rest of the body, has no cure — at least not yet.
But potent change is in the air: At the Madlyn Borelli Multiple Sclerosis Center at Nyack Hospital, which was officially dedicated in October, brand-new treatments are being used to combat the debilitating disease. Until the early 90s, doctors could only treat the symptoms of MS — such as tremors, slurred speech, dizziness, and bladder and bowel problems. To add to the complexity, these symptoms vary by individual and fluctuate over time.
Today, there are more than a dozen treatments and counting. “I can’t emphasize enough that early diagnosis and early treatment make a huge impact on patients’ quality of life, especially as they move into their 50s and 60s,” says Jai Perumal, MD, director of the center and a board-certified neurologist specializing in MS. “There is no benefit to taking a ‘wait-and-see’ approach.”
Some 500 patients from all over the Hudson Valley visit the center, many of whom previously had to travel to Manhattan to receive this level of care. Treatments come in three forms: home injectables, oral medications, and infusions via intravenous therapy in a clinic setting. All of them work by modifying the behavior of the immune system in various ways to minimize further damage to the brain and spinal cord and reduce symptom flare-ups.
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There are seven types of injectables, which are the least aggressive and least expensive form of medication (around $10,000 a year). But they are also the best choice for many. “I’ve had patients be on injectables for 15 years and do quite well,” says Jennifer Reardon, NP, a certified multiple sclerosis and neuroscience registered nurse who works at the clinic. “The latest and greatest doesn’t mean it will work for you.”
For patients who are prone to relapses that can’t be controlled with the injectables, three different oral medications are available. The most aggressive (and expensive) treatments are the infusions, which are most effective in reducing relapses, but also carry the highest risk factors. One third of the people who go on Lemtrada, a highly touted drug that came out in 2014, develop an autoimmune disorder of the thyroid, says Reardon. It is only used on patients who have failed to respond to at least two other medications.
“We match the disease and patient with the right drug, and knowledge and experience matter,” says Perumal. “There is a trade-off between efficacy and risk, but everyone doesn’t need to be on the most effective treatment, and not everyone can be on the least aggressive treatment.”
Researchers are working on drugs that can actually repair damage, but they are not there yet. Two new drugs pending Food and Drug Administration approval are Daclizumab, an injectable that only has to be used twice a month, and Ocrelizumab, an infusion treatment that looks promising for the relapse/remitting form of the disease.
Next on the horizon: discovering the cause of MS. The jury is still out, but it’s thought that there may be a genetic predisposition: more than 100 genetic markers associated with MS have been identified. Low vitamin D levels and smoking increase the risk, but the person has to encounter something, perhaps an infection, that triggers the immune system.
Numbness, tingling, or vision problems are often the first symptoms to show up, says Perumal. A primary doctor can refer patients to a general neurologist, who can make a diagnosis with an MRI of the brain and thoracic spinal cord. The disease shows up as lesions or scar tissue. The next stop is an MS specialist like Perumal, who can determine the most effective drug therapy for an individual.
But treatment doesn’t have to take the form of drugs. Reardon also works with patients on making lifestyle adjustments. For fatigue, one of the most common symptoms, she often suggests a good old-fashioned nap. “It’s better than any medication.” If that’s not an option at your job, step outside and take a walk. Eat high-protein lunches to help get you through the afternoon lull. You can even have a cup of tea or coffee.
Naturally, patients with an MS diagnosis are frightened and overwhelmed when they first come to the clinic. But they usually leave feeling optimistic. “We reassure them that we are confident we can keep them living normal lives,” says Perumal. “You can be diagnosed with MS and still live a good life.”