A Baffling Rise In MS Cases Has Doctors Seeking Answers To The ‘Billion Dollar Question’
“It all looks normal,” Rebeckah Price’s first optometrist told her on January 3, 2023. Inside of the small, sterile room, the then-46-year-old, single mother of three was hunting for answers after the vision in her left eye rapidly deteriorated over the previous 30 days, leaving her scared and shaken. The vision in her eye was like a fogged bathroom mirror post-shower, one she wasn’t able to wipe clear.
Price was referred to another eye specialist, then to a neuro ophthalmologist. After what felt like a never-ending six-hour wait inside a neurologist’s office the following Tuesday, she got a two-word diagnosis that changed her life: multiple sclerosis (MS).
“My heart sank,” Price says. “I do all these wellness things. I didn’t want to receive this [news], and so I told them ‘maybe it’s just stress,’ and I went home.”
By Valentine’s Day she was officially diagnosed with relapsing-remitting MS (RRMS)—one of four different types of MS, which includes clinically isolated syndrome (CIS), primary progressive MS (PPMS), and secondary progressive MS (SPMS).
The Toronto-based yoga teacher and Nike trainer is certainly not alone in her diagnosis, as cases are on the rise domestically and abroad.
As of 2023, 2.9 million people across the globe are living with the disease—up from 2.3 million in 2013, according to the International MS Federation. In the U.S., an estimated 1 million people had MS in 2019, which is about two times greater than previous reports from the previous national study done way back in 1975, according to a National MS Society–funded Multiple Sclerosis Prevalence Workgroup. (Just FYI, the population has not also doubled in this time period; it went from roughly 216 million in ’75 to 328 million in 2019.) This means the risk of an American developing MS is now roughly 1 in 333.
On a global scale, the number of people living with MS increased in every World Health Organization (WHO) region in the world between 2013 and 2020, according to a review published in the National Library of Medicine using the Atlas of MS data.
Yet doctors and experts still don’t have a super clear answer as to why the rates are increasing so noticeably and so fast.
“That’s the billion dollar question,” says Michelle Fabian, MD, associate professor of neurology at the Icahn School of Medicine at Mount Sinai. “It’s been a tough nut to crack for the research community.
Here's a quick primer on multiple sclerosis.
MS is an autoimmune disease that attacks myelin—the fatty insulation that surrounds the nerves in the spinal cord and brain. In severe cases, MS can attack the axon, the nerve fibers responsible for transmitting electrical impulses. Think of your nerves like an iPhone charging cord (with the external insulation playing the role of myelin), says Dr. Fabian. If a cord is simply frayed, you can probably still use it. But if the smaller wires within the cord’s casing are affected, the cord will be almost useless.
Myelin degeneration can result in scarring, or lesions on the nerves, most commonly in the brain and spinal cord, which in turn can cause coordination issues, dizziness, muscular weakness, sensation loss, and slurred speech. One of the most common symptoms is vision changes (like the one Price experienced), when the immune system attacks the optic nerve connecting the eye to the brain.
Something to note: MS symptoms typically last for at least 24 hours, typically longer, according to Elena Grebenciucova, MD, assistant professor of neurology at Northwestern University in Chicago. So, if you’re experiencing a light tingling for a minute or so, it’s not necessarily something that should make you rush to your doctor.
Experts think there could be multiple factors at play when it comes to the baffling rise in cases.
There’s no magic bullet or clear answer just yet, but experts like Marwa Kaisey, MD, assistant professor of neurology at Cedar-Sinai Medical Center, attribute the increase to greater life expectancy and the adoption of more specific in-depth diagnostic criteria, which offers a really clear picture of what conditions must be present to indicate that a person has MS.
For example, in order for a doctor to confirm a patient has MS, they must do three things: Find evidence of damage in at least two separate areas of the central nervous system (hence, the “multiple” in “multiple sclerosis”) which includes the spinal cord and brain, find evidence that the damage occurred at different points in time, and rule out all other possible diagnoses. This diagnostic criteria, which was written in 2017, is helping doctors diagnose more patients with MS, when originally, they might have been diagnosed with another condition.
And, for reasons that are also still unclear and currently being studied, MS is more prevalent in women than men, Dr. Kaisey says. In fact, MS affects two to three times as many women as men, the International MS Federation estimates. (Dr. Fabian points out that women are, in general, more prone to other autoimmune conditions like lupus and rheumatoid arthritis.)
Another possible factor impacting this rise in MS rates? Fewer women are having children.
“Women are waiting longer to have kids, and we’ve seen that pregnancy actually can decrease the risk of MS,” says Dr. Fabian. The biological changes that occur during pregnancy include tamping down a lot of inflammation in the body which can trigger MS. Additionally, pregnancy hormones can, at times, positively affect the immune system, which can lessen the symptoms of MS, according to the National Multiple Sclerosis Society.
One review out of the University of California, Berkeley, also cites childhood obesity as a contributing factor to higher rates of MS in women (rates currently sit around 19.7 percent in the U.S., according to the CDC). Having childhood obesity often results in getting a first period at a younger age, and according to Dr. Kaisey, this, along with many other factors like diet and gut microbiome health, increases the risk of developing MS.
This rise in diagnoses does have a surprising upside.
With greater awareness around the disease, more people are finding answers to their health symptoms sooner, says Dr. Grebenciucova. And that’s a good thing.
Megan Monahan, who was diagnosed with RRMS in her late 30s, first experienced health issues at 22, triggering gallstones and surgery, leaving her without a gallbladder and with chronic hives for over eight months. The Los Angeles–based meditation teacher doesn’t know if there’s any correlation between her MS and the events of her 20s, but she’s thankful to finally be getting answers, empowering her on a path to health and healing—physically and emotionally.
“I spent the first 20-some years of my life kind of like, ‘I’m fine-ing’ my way through,” she says. “I can’t help but wonder if I had [received] an MRI 10 years ago, would the lesions have been there?”
Monahan and Price would do almost anything to reverse the damage MS has wreaked on their bodies and lives. “I don’t wish this disease on anyone. It’s one of the most awful things I’ve ever had to endure,” Price says. “Whether you have MS or not, I hope that women everywhere learn how to hold space for themselves—on their terms. Every day is a fight, don’t give up.”
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