Stephanie Smith vividly recalls the moment she knew something was seriously wrong with her body. She was traveling with a friend on an airplane, holding a magazine on her lap. As she bowed her head to read, both of her hands went numb.
“It was very subtle, and it wasn’t painful, but it was a sensation that I had never felt before,” says Smith, of Wilmington. “I was very [much] in touch with my body because I was a runner at that time. …I knew that feeling was not normal.” When she returned from her trip, she saw her doctor, who referred her to a neurologist.
After a year of magnetic resonance imaging (MRI) tests, a nerve conduction study, and other physical and neurological exams, Smith, then 40, was diagnosed with multiple sclerosis (MS).
There is currently no reason we know of as to why MS is more common in women, although autoimmune conditions tend to be more predominant in females. We don’t know [if] MS is actually occurring earlier in women or we’re catching it earlier because women are more likely [then men] to present [medical concerns] to their physicians.
—Jessica A. Lowe, M.D., neurologist, Bayhealth Neurology
Her neurologist believed those symptoms were the onset of the disease for Smith. “I was very surprised because I had never had any sort of serious medical condition before, and I felt strong and healthy and fit at the time I started having any symptoms,” Smith says.
Her symptoms intensified, however. Her hands and the bottoms of her feet tingled. She developed a sensitivity to heat. When the temperature reached above 80 F, vision would blur in one eye. “It felt like everything in my body would slow down, making it harder to move my arms and legs,” she says.
Smith’s neurologist prescribed medication, which she’d have to self-inject for seven years; oral medications followed, but still her symptoms worsened. Her doctors would soon discover that she had a progressive form of MS, which would not respond to treatment. “There wasn’t anything out there that didn’t have high risk factors, such as cardiac or liver risk or encephalopathy,” Smith says.
While Smith eventually stopped the medication and lost her ability to walk, she hasn’t let that slow her down. Regular physical therapy builds upper body strength, which helps her transfer from a wheelchair and mobility scooter to get around. She still tries to “force that nerve signal from my brain to lower extremities” through activities like squats between low parallel bars.
Looking for the cause
A 2019 study showed that 1 million people in the United States have received an MS diagnosis, according to the National Multiple Sclerosis Society. Women are four times more likely than men to develop MS. While the cause of MS is still unknown, the disease has been linked to a number of risk factors, including chronic stress and smoking, but studies also point to female hormones, inflammation, vitamin D deficiency, and obesity.
Like other autoimmune disorders, with MS, the body’s immune system—designed to protect you from getting sick—mistakenly turns against your own tissues. MS affects nerves in the brain and spinal cord, and the immune system attacks myelin, the insulation that covers and protects the nerves. A nerve cell with faulty myelin can short circuit and affect the transmission of signals to and from the brain, like a worn electrical wire.
“MS is a leading cause of disability in young adults and often affects people in their early 20s and 30s,” says Jessica A. Lowe, M.D., a neurologist at Bayhealth Neurology in Dover and Sussex County. “There is currently no reason we know of as to why MS is more common in women, although autoimmune conditions tend to be more predominant in females,” she explains. “We don’t know [if] MS is actually occurring earlier in women or we’re catching it earlier because women are more likely [than men] to present [medical concerns] to their physicians.”
[This] put me into remission and has helped me manage my condition. I can still do most of my daily activities and have learned not to push myself too hard and to rest when I need to. My MS is currently in remission, and I stay well by eating a health diet and running on a regular basis. …I can now run a mile in 10 minutes or less, which is something I never thought I would be able to accomplish.”
—Holly Metware, 32
One theory is that sex hormones like testosterone and estrogen play a role. Other theories suggest genetic predisposition, environmental and geographic factors, and viral infections.
“There is a suspicion that the Epstein-Barr virus (EBV) can trigger MS because it can trick the immune system into attacking itself,” Lowe says. “[Or], you may be at higher risk if your mother had the condition or a combination of genes exist.” Lowe also points to such environmental factors as proximity to the equator and sunlight exposure (vitamin D deficiency), as well as obesity in childhood, which shows a strong correlation with developing MS later in life.
After the diagnosis
Holly Metware, 32, of Kent County, has struggled with chronic fatigue and muscle weakness since early adolescence. When she’d describe her symptoms to her primary care doctors, “they brushed them off because I looked OK on the outside,” she says. After she gave birth to her first child in 2020, Metware developed sensitivity to light, nerve pain, and impaired vision in her left eye. “I was eventually diagnosed with optic neuritis by [an] ophthalmologist who determined that my optic nerve was inflamed.”
When she began to experience numbness and tingling in her hands and feet, Metware turned to a neurologist at ChristianaCare and an MRI for answers. “When I would look down, I would feel a vibration from the top of my spine all the way down to my hips—what’s referred to as Lhermitte’s sign,” she says. “And when I pushed myself too hard, I would occasionally experience foot drop [difficulty lifting the front part of the foot].”
Jason M. Silversteen, D.O., a neurology specialist, director of the Center for Comprehensive MS Care, and the clinical lead for ambulatory neurology, diagnosed her with relapsing-remitting MS, a condition where cycles of relapse and recovery occur. He immediately prescribed oral medication.
“[This] put me into remission and has helped me manage my condition,” Metware says. “I can still do most of my daily activities and have learned not to push myself too hard and to rest when I need to. My MS is currently in remission, and I stay well by eating a healthy diet and running on a regular basis. …I can now run a mile in 10 minutes or less, which is something I never thought I would be able to accomplish.”
With MS, early diagnosis and treatment, as well as highly efficacious therapy, are paramount, Silversteen says. The first step in diagnosing MS is typically an MRI of the brain and spine with contrast, which can identify lesions in the brain that are an indicator for the disease. A neurologist may identify active lesions, or old lesions that could indicate that a patient may have had attacks in the past. In some cases, a lumbar puncture may be necessary to conduct a spinal fluid analysis to confirm an MS diagnosis.
“Once a diagnosis has been made, we try to stay ahead of the disease as much as possible, individualize a treatment plan to each patient, and change their therapies as needed,” Silversteen explains. “It’s important to have a care model that’s multidisciplinary and comprehensive so you’re addressing all medical [and] nonmedical needs. This disease often hits people when they’re in their prime, starting a career or starting a family. Because it leads to disability both physically and cognitively, the implications are vast. Our goal is to help individuals adapt and live with this condition and give them the best quality of life possible.”
Once a diagnosis has been made, we try to stay ahead of the disease as much as possible, individualize a treatment plan to each patient, and change their therapies as needed.
— Jason M. Silversteen, D.O., neurology specialist, Center for Comprehensive MS Care
Monitoring and management
The integration of medical, psychological, and rehabilitative care is important to meeting the complex needs of patients with MS. At the Center for Comprehensive MS Care, Silversteen and two other specialists collaborate with an MS nurse, a nurse practitioner, a physician assistant, a social worker, a neuro-ophthalmologist, a psychologist, and specialty pharmacists to ensure their patients can access all the specialists they need in one location.
“This multidisciplinary approach to MS treatment helps us provide comprehensive management of patients’ care and allows us to address their needs to keep them independent, functioning in the community, working as long as possible, and provide them with all the resources they need to have a good quality of life,” Silversteen says.
As women age, the progression of the disease may also change. Eighty-year-old Marty McLaren, of Dover, was diagnosed with relapsing-remitting MS in 2002.
“I was a middle school teacher at the time and was struggling to get up to my second-floor classroom every day due to overall weakness on my right side,” McLaren recalls. After her diagnosis, she began taking a daily injectable that put her MS into remission, but she was concerned about continuing the medication after she retired, due to the cost. However, she also feared a relapse if she switched to an oral medication.
Seventeen years later, Silversteen recommended McLaren stop her medication entirely. “As women get older, their immune system naturally weakens, so the risk of them having new MS attacks or new inflammation within their brain or spinal cord goes down significantly,” Silversteen explains. McLaren hasn’t taken medication in five years and hasn’t had a relapse or any symptoms.
She asserts that staying active, eating a nutritious diet, prioritizing supportive relationships, and taking it one day at a time (“Focus on what you can do, rather than what you can’t do,” she notes) is crucial. “I’m involved in the MS Shore Support Group in Sussex County, which has been very beneficial,” she says. “It’s a diverse group of people in terms of symptoms and personalities, but we’re all very supportive of each other, and it’s a great way to socialize and find out about new resources and treatments.”
Smith believes there are four keys of personal mindset that allow her to enjoy life while living with a condition like MS. “Flexibility and a sense of humor are number one, since MS is unpredictable from day to day,” she says. “I focus on gratitude for the love and support I have in my life from friends and family, and from complete strangers whose generosity of spirit touches me deeply whenever I encounter it. And a mindset of being present, which allows me to see the joy and beauty in the little moments of life.”
At a Glance: 3 Types of MS
- Relapsing-remitting MS (RRMS) is characterized by clearly defined attacks of disease activity and worsening symptoms, followed by remissions when the disease doesn’t progress. Symptoms may improve or disappear during remission. According to the National MS Society, RRMS accounts for approximately 85 percent of diagnosed cases of MS.
- Secondary progressive MS (SPMS) often occurs after an initial RRMS diagnosis. Disability may gradually increase as the disease progresses, with or without evidence of flare-ups and relapses. Eventually deficits increase, leading to a steady decline without periods of remission.
- Primary progressive MS (PPMS) affects about 10 to 15 percent of people with MS. Individuals experience a steady progression of the disease with no clear relapses or remissions.
It’s important to note that a high percentage of MS cases do not progress. “MS is not universally progressive,” says Jason M. Silversteen, D.O., director of ChristianaCare’s Center for Comprehensive MS Care. “There’s a misconception that if you receive a diagnosis, it’s a foregone conclusion that you will get worse. That’s not always the case. If you are diagnosed with MS, there are numerous treatment options available today. The most important thing is to treat people early and aggressively in an attempt to keep them stable and prevent the disease from becoming progressive.”
*Some names have been changed to protect privacy.
Related: Heart Disease Poses Major Risks for Women in Delaware and Beyond
