More than 2.3 million people live with multiple sclerosis, an autoimmune disease that is chronic and often progressive. Everyone experiences MS differently, with symptoms ranging from mild fatigue to paralysis.
Advancements in the way it’s treated, however, should give people hope. “It’s exciting,” said Dr. Jill Conway, a neurologist and director of Novant Health’s MS program in Charlotte. (That promise of progress is why she specialized in MS. We’ll get to that shortly.)
The days of “diagnosis and adios” are well behind us, Conway said, referring to a time when neurologists had little to offer MS patients. “The medications today are so fantastic that people who start on these really effective therapies are unlikely to have another relapse. So, the faster we diagnose and treat MS, the less cumulative damage we see over time,” she said.
Aside from treating the disease, often a mix of medication and regular blood work, Conway helps patients manage their symptoms. This may include a referral to see a urogynecologist or physical therapist.
“It’s so important they get this support, but it can be a real burden to go three or four different places,” Conway said. “Some of my patients travel hours to get here. Others cannot drive.”
When Novant Health Multiple Sclerosis Care SouthPark opened in June, all of those services became centralized in one convenient location.
The clinic, located at Novant Health SouthPark Medical Plaza in Charlotte, has on-site lab services and an infusion center for both MS and rheumatoid arthritis patients. People with other neurological conditions can seek help there, too.
“It’s hard to manage a chronic disease. Nobody wants to do this, right?” Conway said. “Having everything in one place is a much better service for patients, and that’s what I’m thrilled about.”
Understanding MS
The immune system is designed to kill viruses, bacteria and cancer cells. But it can – and does – make mistakes. In people with autoimmune diseases, the body sends out inflammatory cells when there is no infection or injury. Over time, this can lead to chronic inflammation, Type 1 diabetes and diseases like multiple sclerosis.
With MS, in particular, the body targets its brain and spinal cord, but it doesn’t look the same on anyone. Some have mild symptoms, such as numbness, blurred vision and tingling in the limbs. In severe cases, a person may become blind or paralyzed.
It’s commonly diagnosed around age 30, she said, but can affect anyone at any age.
And women are affected far more often than men, according to the National Multiple Sclerosis Society, which considers Novant Health one of its Partners in MS Care, a designation reserved for health care systems with a demonstrated expertise in treating it.
How it's managed
Medication comes highly recommended for patients with primary progressive MS and those with certain “markers.”
“People who have more relapses in the first year tend to fair worse, as do those with more spinal cord lesions,” Conway said. “And it’s unclear why, but men and Black people, patients with darker skin, tend to have more aggressive MS.”
The medications, also known as disease-modifying therapies, help slow the progression of MS by reducing the frequency or severity of relapses. Not everyone needs it, Conway said, but even those with mild MS can benefit from treating their disease.
“Often, a 25-year-old can recover from a relapse, and they look great. But our vision, our balance, that gets worse as we age anyway. People can end up in real trouble by letting the damage accumulate. So, our goal as neurologists is to treat aggressively now so later, our MS patients are still doing great,” she said.
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Highly effective medications
There is no one-size-fits-all when it comes to managing MS. Conway takes a tailored approach to help patients find the right disease-modifying therapy, saying she considers what the patient wants, something that works for their lifestyle, but also what she thinks they need.
Kesimpta, Ocrevus and Tysabri are among the most effective FDA-approved medications, she said.
- Kesimpta, the most recent one to gain approval, is a once-a-month injection. It became available to patients in August 2020.
- Ocrevus works similarly to Kesimpta, but it is an infusible medication, administered via IV twice a year. “It’s a great option for people who don’t want to be reminded they have MS every month.”
- Tysabri, a laboratory-produced monoclonal antibody, is a once-a-month infusion. It’s designed to stop the potentially damaging immune cells in the blood stream from seeking out the brain and spinal cord.
Lemtrada is another highly effective MS drug, Conway added, but it also carries more risks. Because of its safety profile, the FDA recommends that this medication generally be reserved for people who haven’t responded well to two or more MS therapies.
“We also consider what their insurance will cover,” she said.
Helping people is ‘satisfying’
As Dr. Jill Conway, a neurologist and director of Novant Health’s multiple sclerosis program in Charlotte, worked her way through medical school, her interest in treating MS came into focus.
“One of the things neurology gets a bad rap on is that we can’t really help people with neurological diseases. As physicians, we have fewer resources to help people with dementia, for example. And we’re fixers by nature, so we hope to improve how it’s treated in the years ahead.”
At the time, better treatments for MS were coming to market. She saw firsthand how debilitating the disease can be, but also how treatable it had become.
“It’s really satisfying,” Conway said. “In the 20 years I’ve been doing this, the number of patients I see who have a walker or a wheelchair has decreased drastically. Today, people diagnosed with MS who treat their disease aggressively can live long, fulfilling lives.”
Conway also realized that she was most satisfied when she could follow patients long-term. And MS is a lifelong disease.
“I’ve worked as a neurologist here in Charlotte for 14 years, and some patients have been with me that whole time. I’ve seen them go through pregnancies; now their kids are in middle school. I just love it.”
She lives in Charlotte and has three children – triplets – who are all in college. She has a passion for traveling and hiking, and even walks to support MS.
"I learned your blisters can have blisters," Conway said of a 50-mile walk. "I learned it's all about the shoes."
In April, she participated in Walk MS in Charlotte, which gathered the community for a powerful purpose: to end MS. They raised money to help support research, breakthroughs and, ultimately, a cure.
“It was really fun,” Conway said. “Lots of patients came out. Novant Health set up a big booth, and we had giveaways, lots of cool stuff. We had a great time.”
Comprehensive MS care
Once treatment starts, Conway helps people manage their symptoms. Since urinary frequency or urgency is common with MS, patients are often referred to a urogynecologist. Physical or occupational therapy benefits those with leg weakness, problems with hand dexterity and similar issues.
All of these specialists are in the same building as Novant Health Multiple Sclerosis Care SouthPark, located on Fairview Road in Charlotte (near SouthPark Mall). Other benefits include:
- Novant Health Infusion SouthPark, where MS and rheumatoid arthritis patients can receive medication infusions. “This is what I’m most excited about,” Conway said. “I’ll be right down the hall if a patient needs me. And we’ll do regular education with the staff on these particular medications and explain what patients may be struggling with.”
- Lab services, where patients can get their blood drawn. Since most MS patients on disease-modifying therapies need regular blood work, this service will save them a trip to an outside lab.
- Imaging, where patients can get an MRI. Imaging is used not only to diagnose MS, but to ensure their medication is working effectively.
“Virtually all their needs can be met here,” Conway said of the space. “As someone who’s done this for a long time, that's what makes this so exciting. It’s next level.”
Conway is seeing patients alongside Marie Moore, a family nurse practitioner who is highly specialized in treating MS. As president of the International Organization of Multiple Sclerosis Nurses, Moore has dedicated years to MS advocacy, education and research.
“I think part of being a specialty care center is having not just physicians, but other providers who are really well trained,” Conway said.
The two have worked together for many years. And they are excited to welcome Dr. Jennifer Lord, another neurologist who specializes in MS, on Aug. 1.
Lifestyle is important, too
Maintaining a healthy lifestyle is recommended for everyone, but especially those with chronic diseases.
- Exercise: “Study after study shows MS patients who exercise regularly do better than patients who don’t. It’s super important,” Conway said. Exercising also helps reduce the likelihood of a fall, she added, since it strengthens your core.
- Sleep: The brain likes sleep, too. “We also make sure that MS symptoms don’t interfere with your sleep. If you have to wake up and go to the bathroom six times every night, that’s an issue we want to solve.”
- Diet: Eat more fruits and vegetables but cut back on processed foods that can hide a lot of flour and unnecessary sugar. Studies show the Mediterranean diet is associated with better aging of the brain, as well, so a healthy diet is always encouraged.
- Vitamin D: Low-vitamin D is a risk factor for developing MS and making it progress faster, Conway said. People who are vitamin D-deficient may need to consider supplements (always consult your doctor first).
- Curb unhealthy habits: Things like smoking, alcohol or drug use can compromise healthy aging and brain function over time. She said avoiding these – and protecting your brain with a healthy lifestyle – can help you feel better today and into the future.