1. No one knows what causes it.
Multiple sclerosis is a quirky autoimmune disorder that attacks the insulation protecting the nerves in the brain and spinal cord and ends up targeting the eyes and limbs. About 400,000 Americans have it.
There’s no known cause, but genetics definitely play a role: You have a 3 to 4% chance of developing it if one of your parents had it. And if you have an identical twin with MS, your chance of getting it goes up to 30%. People of Northern European descent are most apt to get it.
Another risk factor is having had mononucleosis. Research shows that people who’ve had the Epstein-Barr virus (which causes mononucleosis) have a higher risk of MS. One recent study, published in the journalMultiple Sclerosis, found that the risk of MS was highest in people under age 26 who carried antibodies for the Epstein-Barr virus.
2. It hits when you’re in your prime.
MS is the No. 1 cause of neurological disability in young people. “The average age of onset is 25 to 30, so we suspect there’s a relationship between peak fertility, hormones, and the immune system,” says Tanuja Chitnis, MD, an associate professor of neurology at Brigham and Women’s Hospital and Harvard Medical School. Interestingly, women who have it suffer 70% fewer attacks during pregnancy, though it’s common to relapse soon after giving birth.
Women are twice as likely as men to have MS, but when men do develop MS it’s often more severe.
3. The symptoms can be wide-ranging.
MS is different in everyone. In some people, it inflames the optic nerve and causes a short spate of double vision. (Here are 10 things your eyes say about you.) Other times it attacks the limbs and weakens the legs.
There’s also a lot of variety in the severity of symptoms. Some patients might have an MS attack, get treated, and then be perfectly fine (at least for a while). Others will deteriorate more quickly.
4. It’s not fatal.
MS itself is unlikely to kill you. Most patients have a normal life expectancy and eventually die from something completely unrelated (such as heart disease or cancer). But it can certainly take a toll on your life and ability to function, which can lead to depression; suicide rates are higher than average in people with MS.
5. Symptoms tend to disappear and reappear—sometimes years later.
There are four types of multiple sclerosis, but 85% of patients have the relapsing-remitting variation. It’s not unusual to have a flare-up that lasts a few days or weeks, followed by what seems like a complete recovery. “People come in and they’re wondering, ‘How can I be perfectly healthy and then have these attacks and lesions on my brain?’ ” says Farrah Mateen, MD, an assistant professor of neurology at Massachusetts General Hospital. (This also makes MS hard to diagnose.)
That said, the disease does tend to worsen with age, because as you get older the nervous system isn’t able to repair itself as well. Many people have relapsing-remitting MS that turns into a more rapidly progressing form 10 to 20 years later.
6. You won’t necessarily end up in a wheelchair.
MS often impacts mobility, but don’t assume you’ll become totally disabled. About two-thirds of patients don’t need a wheelchair even 20 years after they were first diagnosed. A cane or crutches might offer all the help you need, though some people who get tired easily or have balance problems may turn to an electric scooter or wheelchair.
7. There’s no cure—yet.
“I like to tell my patients that we don’t have a working fire extinguisher, but we have a lot of great smoke alarms,” says Mateen. Right now there are many pills, infusions, and injectable drugs that can reduce the chance of a relapse by half.
Getting adequate vitamin D has also been shown to protect against MS (the disease is much more common in Canada and the northern half of the US than it is in southern states) and help keep symptoms in check. Chitnis tells patients to take a vitamin D supplement, as well as a coenzyme Q10 supplement: Research has shown that people with MS who take 500 mg/day of CoQ10 have significantly less inflammation in just 12 weeks.
As for a cure, it’s not just a pipe dream: MS research is very well funded, which is why there have been enormous advances in treatment over the past 20 years. “We’re really starting to see how MS progresses, how neurons degenerate, and how to protect them,” says Chitnis. “Our understanding grows by leaps and bounds all the time, and I fully believe a cure is possible in my lifetime.”
1. Despite its name, you know that there is nothing romantic about the “MS hug.”
2. Having “foot-drop” and walking through a dog park can be a messy combination.
3. You know the “Swank diet” doesn’t describe the food on a country club menu.
4. Crowds and loud noise make you want to flee.
5. MS makes you a logistics specialist: You immediately scout out the accessibility, parking, and potty situation of every new location.
6. Rotating injection sites on your body is more important to you than rotating the tires on your car.
7. Who the heck rock climbs and windsurfs like the people in MS ads?
8. You know why the basket under a rollator collects as much junk as a purse.
9. Your body decides to spasm the moment the needle pierces your skin.
10. Taking a shower can be more tiring than it was getting dirty.
11. You wish everyone wore a nametag.
12. You know the difference between an MS med’s flu-like side effects and the flu.
13. You don’t just forget where you put your keys, but also where you parked the car.
14. You hope the test of touching your nose and the doctor’s finger has some medical relevance, and isn’t just a practical joke.
15. The “retail squeeze”: as your gait gets wider, the stores’ aisles appear to get narrower.
16. Cutting one’s toenails is no easy task.
17. The chefs on television should try preparing a meal from a seated position.
18. This scooter is my lifeline, not your ATV plaything—so get off!
19. It’s easier to get a disabled parking placard than it is to find an empty disabled parking space.
20. During a game of hide and seek, you’re always the easiest to find.
21. When you see someone wearing orange, you immediately think “MS awareness,” not “crossing guard.”
22. The closer you are to the bathroom, the worse your urge is to go.
23. You know that the nine-hole peg test is not something they sell in the gift shop at Cracker Barrel.
24. “Fun in the sun” isn’t in your vocabulary.
25. You’ve had so many MRIs, you can hum the melody of the pings and bangs.
26. You know you could never have a successful career as a robber, due to terribly slow getaways.
27. When people stare at your cane, you tell them you came straight from tap class.
28. “RRMS”, “SPMS”, and “CPMS” aren’t the sounds Grandpa makes sleeping in his chair.
29. When someone tells you, “You look so good,” you wonder if they’re referring to you or that pan of lasagna.