Vee, an artist in Nashville, was hosting an event at her gallery when she started feeling pain in her back and legs. She knew it was a sign of worse things to come, but she brushed it off, chatting with visitors well into the evening. The next day she couldn’t move. For nine days, Vee remained immobile, until the episode passed and she could walk and paint again.
That’s Vee’s life with multiple sclerosis (MS), a chronic disease that affects her central nervous system.
“I’m blessed that an episode like that happens only every three years or so,” she says. “The symptom that lets me know to take it easy is called ‘MS girdling’ (also known as an ‘MS hug’). It feels like your rib cage is being squeezed by a gigantic boa constrictor crushing your insides. Really, it is just the muscles in between your ribs going into spasms. So yes, MS is terrible. But it isn’t going away, so I just try to work with it.”
Vee is one of an estimated 1 million people in the U.S. who have multiple sclerosis, an often disabling condition that affects the central nervous system. People with MS may have pain, vision problems, or weakness in their arms or legs. There are indications that the prevalence of MS has increased in recent years, and though the cause is unknown, research continues to better understand it.
What is MS?
The brain and spinal cord make up the central nervous system, which coordinates all the activity in the body: moving around, breathing, emotional reactions, your heartbeat and more. A protective coating called myelin surrounds the nerve cells and helps to transmit nerve signals properly.
With MS, myelin is damaged, scar tissue develops in the damaged area, and it hardens (sclerosis). This makes it harder for the nerve signal to get through. Because the damage can occur in multiple places, and the central nervous system controls the whole body, the resulting problems differ from person to person, or episode to episode.
Symptoms of MS
The first symptoms of MS usually appear sometime between age 20 and 40. They can include:
- Blurred vision, double vision, or blindness in one eye
- Problems with coordination and balance
- Numbness or weakness in the arms or legs
- Sensitivity to heat
Over time, symptoms may come and go, worsen or change. Each person who has MS experiences it differently. At its worst, MS can result in paralysis, but that is uncommon. While MS has no universally effective treatment, medication and self-care may cause it to go into remission, with no symptoms being experienced for long periods of time. MS is not fatal, though in very rare cases, complications from the condition can lead to death. Flare-ups can be severely debilitating.
“I get fatigued easily, and I’m very sensitive to changes in weather and air pressure,” says Vee. “These changes increase the pain in my spine, which can feel like it’s sending out shock waves and electrocuting me. My vision in my right eye decreases so that it no longer sees with depth, giving me 2D rather than 3D sight. I have dealt with this for so long that it no longer seems strange.”
Risk factors for MS
While there is no typical MS patient, some populations do have higher rates:
- Women outnumber men 3:1.
- Whites are more likely than African Americans, Asians, or Hispanics to have MS.
- People with a parent or sibling who has MS are more likely to have it.
- It is more common in northern states than southern states.
Treatment for MS
There is no cure for MS. Certain symptoms may be treated with steroids; other medications may be prescribed to slow the progression of the disease. Some people may benefit from physical therapy.
General healthy habits are part of managing MS so that when an episode comes up, the body is better able to deal with it. This includes:
- Healthy diet
- Regular exercise
- Proper sleep
- Routine medical care
“I have become very in tune with my body,” says Vee. “If I’m out with friends and I feel that it’s time to go home, I will leave. I feel like a party pooper sometimes, but I have some true-blue friends who understand. I think listening to your body is the most important thing anyone with MS can do.”