It's a disease hidden in plain sight.
Multiple Sclerosis (MS) impacts about 1 in every 400 people, according to the Multiple Sclerosis Clinic at Riverside Regional Medical Center. That means about 4,000 Hampton Roads residents live with the disease, but many don't know about it until their body has already experienced irreversible damage.
"It's not something that you see," said Tiffany Sweigart, a Virginia Beach dental lab technician and Chesapeake resident living with MS. "People make you feel like you're crazy with this disease."
MS is an autoimmune disease that causes inflammation within the central nervous system. That inflammation causes the development of lesions, or scarring, on the brain and spinal cord and can prevent the central nervous system from communicating with the rest of the body.
"We have pathways in the brain and spinal cord that correspond to the sensory pathways going through the body. So if you have a lesion, it's short-circuiting. It causes the signal not to be able to get through," said Dr. Kermit Lloyd, who leads the Multiple Sclerosis Clinic at Riverside Regional Medical Center. "If there's a lesion, for example, in your right optic nerve, you might have pain there and loss of vision."
Sweigart still recalls moments before her diagnosis when her brain and body couldn't connect.
"[One time], my leg just got so tired I couldn't lift it up. I had no idea what was going on," she explained. "My brain was not telling my leg to do what it needs to do. And I went and sat down and I broke down crying. I was like, I don't know what's going on with my body, but something's wrong."
Sweigart estimates that she's been living with MS since childhood, but wasn't officially diagnosed until 2019.
"It took years," she said. "As a kid, I was avid in sports. But no matter how much I was active, I was always exhausted."
Like Sweigart, most MS patients experience symptoms like numbing and fatigue in waves, meaning the signs oftentimes go ignored.
But time is of the essence with this disease.
"The data is quite clear that early treatment is associated with better outcomes," said Dr. Lloyd.
Dr. Lloyd says the more a patient experiences lesions or scarring, the harder it is to get rid of them, and oftentimes the scarring caused by MS is permanent.
"You don't always recover. After a few events, it does not go all the way back," he explained. "So prevention is key."
Dr. Lloyd says the most common symptoms to look out for are fatigue, loss of vision, weakness, frequent urination, and numbing.
"The most common way that it presents itself is the person thinks that they slept wrong. They'll wake up with an arm numb," he explained.
And because these symptoms oftentimes appear unexpectedly, Sweigart says sometimes her peers have a hard time understanding the disease.
"[A symptom] can literally be from a 30-45 minute time span and the next minute you're fine," she explained. "Me stumbling could just be seen as me being clumsy. My misspeaking can just be seen as me misspeaking, but in reality, I'm having a hard time finding my words. People don't see what I feel and how we as an MS group feel...it's pretty daunting sometimes."
This is why Dr. Lloyd says if you know someone living with MS, be patient. Especially during the upcoming summer months, as MS patients are particularly sensitive to heat since the high temperatures can cause their symptoms to flare.
"They don't feel normal inside," he added. "So be patient with them, because sometimes family members expect them to do everything exactly as they did before."
The official cause of MS is not widely understood, but it's believed to be caused by a genetic disposition and is heavily linked to low levels of Vitamin D.
"There are over 200 genes that have been linked to MS," said Dr. Lloyd. "The Epstein-Barr Virus, which causes mononucleosis, is thought to be a trigger for this."
Dr. Lloyd says the treatment options surrounding MS have improved dramatically thanks to countless research and awareness campaigns. The disease-modifying therapies and treatment options focus primarily on keeping the patient stable.
"Some patients do improve somewhat, but we're just trying to keep them stable, no worsening of disability," he explained. "And we've got the tools now."
And Dr. Lloyd says just staying healthy can significantly improve MS symptoms and prevent lesions.
"Take your medication, watch the vitamin D level, and stay physically active," he said. "The Mediterranean diet is the diet that is recommended for this."
Sweigart says since starting treatment, and thanks to a good support system, she has been able to thrive in both her professional and personal life.
"One of the biggest things I can actually say is that you need a good support system. And that's not even just [at] home, you need it in your work life as well," added Sweigart. "I can see that there's a future for me."
World MS Day is celebrated every year on May 30. You can donate to MS research here.
