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Medical Conditions

Multiple sclerosis

Synonyms: MS, Disseminated sclerosis, Encephalomyelitis disseminata

Overview

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. Many investigators believe MS to be an autoimmune disease -- one in which the body, through its immune system, launches a defensive attack against its own tissues. In the case of MS, it is the nerve-insulating myelin that comes under assault. Such assaults may be linked to an unknown environmental trigger, perhaps a virus.

Most people experience their first symptoms of MS between the ages of 20 and 40; the initial symptom of MS is often blurred or double vision, red-green color distortion, or even blindness in one eye. Most MS patients experience muscle weakness in their extremities and difficulty with coordination and balance. These symptoms may be severe enough to impair walking or even standing. In the worst cases, MS can produce partial or complete paralysis. Most people with MS also exhibit paresthesias, transitory abnormal sensory feelings such as numbness, prickling, or "pins and needles" sensations. Some may also experience pain. Speech impediments, tremors, and dizziness are other frequent complaints. Occasionally, people with MS have hearing loss. Approximately half of all people with MS experience cognitive impairments such as difficulties with concentration, attention, memory, and poor judgment, but such symptoms are usually mild and are frequently overlooked. Depression is another common feature of MS.

There is as yet no cure for MS. Many patients do well with no therapy at all, especially since many medications have serious side effects and some carry significant risks. However, three forms of beta interferon (Avonex, Betaseron, and Rebif) have now been approved by the Food and Drug Administration for treatment of relapsing-remitting MS. Beta interferon has been shown to reduce the number of exacerbations and may slow the progression of physical disability. When attacks do occur, they tend to be shorter and less severe. The FDA also has approved a synthetic form of myelin basic protein, called copolymer I (Copaxone), for the treatment of relapsing-remitting MS. Copolymer I has few side effects, and studies indicate that the agent can reduce the relapse rate by almost one third.

Other FDA approved drugs to treat relapsing forms of MS in adults include teriflunomide and dimethyl fumarate. An immunosuppressant treatment, Novantrone (mitoxantrone), is approved by the FDA for the treatment of advanced or chronic MS. The FDA has also approved dalfampridine (Ampyra) to improve walking in individuals with MS. One monoclonal antibody, natalizumab (Tysabri), was shown in clinical trials to significantly reduce the frequency of attacks in people with relapsing forms of MS and was approved for marketing by the U.S. Food and Drug Administration (FDA) in 2004. However, in 2005 the drug’s manufacturer voluntarily suspended marketing of the drug after several reports of significant adverse events. In 2006, the FDA again approved sale of the drug for MS but under strict treatment guidelines involving infusion centers where patients can be monitored by specially trained physicians. While steroids do not affect the course of MS over time, they can reduce the duration and severity of attacks in some patients. Spasticity, which can occur either as a sustained stiffness caused by increased muscle tone or as spasms that come and go, is usually treated with muscle relaxants and tranquilizers such as baclofen, tizanidine, diazepam, clonazepam, and dantrolene.

Physical therapy and exercise can help preserve remaining function, and patients may find that various aids -- such as foot braces, canes, and walkers -- can help them remain independent and mobile. Avoiding excessive activity and avoiding heat are probably the most important measures patients can take to counter physiological fatigue. If psychological symptoms of fatigue such as depression or apathy are evident, antidepressant medications may help. Other drugs that may reduce fatigue in some, but not all, patients include amantadine (Symmetrel), pemoline (Cylert), and the still-experimental drug aminopyridine. Although improvement of optic symptoms usually occurs even without treatment, a short course of treatment with intravenous methylprednisolone (Solu-Medrol) followed by treatment with oral steroids is sometimes used.

www.ninds.nih.gov/disorders

Symptoms

Symptom
Frequency
Numbness
Fatigue
General weakness
Headache
Dizziness
Leg pain
Depression
Reduced vision
Leg weakness
Back pain
Show more symptoms
General pain
Facial paralysis
Twitching
Anxiety
Convulsions
Memory problems
Involuntary urination
Neck pain
Leg cramps
Lower back pain
Double vision
Shoulder pain

Demographics

Age Distribution

The average age of someone with Multiple sclerosis is 46.

Gender Distribution

Multiple sclerosis is significantly more common among females.

Geographic Distribution

Prevalence is higher in the Midwest.
Prevalence is also higher in the West.

Note that above data is by region (Northeast, South, Midwest, West) and not by state.

Medications

Prescription

Medication Name
Substance
Drug Class
Avonex
interferon beta-1a
Immunomodulators
Copaxone
glatiramer acetate
Immunomodulators
Betaseron
interferon beta-1b
Immunomodulators
Tecfidera
dimethyl fumarate
Immunomodulators
Gilenya
fingolimod
Immunomodulators
Aubagio
teriflunomide
Immunomodulators
Tysabri
natalizumab
Immunomodulators
Ampyra
4-aminopyridine
Potassium Channel Blockers
Prednisone
prednisone
Corticosteroids
Solu-Medrol
methylprednisolone
Corticosteroids
Zoloft
sertraline
Antidepressants
Prozac
fluoxetine
Antidepressants
Neurontin
gabapentin
Anticonvulsants

Risk Factors

Racial/Ethnic Distribution

Prevalence is significantly higher among Caucasians.

Tobacco Use

Tobacco use is a significant risk factor for Multiple sclerosis.

Income

Prevalence is higher among high income individuals.

Stories

In order to know a condition, you have to know the stories of the people living with it. That's why we asked people, “What is it like?” This is what they had to say.

Tammy

With two teenagers, an active duty Air Force husband who just recently finished his medical residency after years of school, and in training for a new career herself, Tammy Nally doesn’t just enjoy an occasional nap now and again — she requires them.

And despite a roller coaster of changing treatments and occasional disability, Tammy stays active.

Read Tammy's Story

She was officially diagnosed with MS at 29, several months after the birth of her second child, a daughter. It wasn’t a huge surprise: at 20, she’d suddenly lost vision in her left eye and was told it was optic neuritis. She recovered well following a brief hospitalization and course of steroids. Six months later, it happened again, in the other eye, accompanied by numbness and tingling in her extremities.

Finally suspecting MS might be the cause, doctors told her she probably had the disease, but that her MRI was inconclusive. Carry on with your life, they advised her, and we’ll deal with problems as they pop up.

Nine years went by: she got married, had two children, no major health issues to speak of. But then came the particularly hot summer in New York, and some dreadfully familiar sensations returned. Initially Tammy downplayed the persistent fatigue as a normal symptom of newbornitis, but when she developed tingling and numbness in her legs, Tammy went back to her doctor.

This time, the diagnosis was clear: she had MS.

“So, do we do the same cycle of intravenous and then oral steroids?” she’d asked her doctor. No ma’am, he told her. It’s a weekly injection for you now, from now on.

“Okay, I guess that’s how we’re doing it now,” she said she recalled thinking. “And it was fine. But it was also the kiss of death: I was now permanently on something.”

Prescribed the interferon drug Avonex, her doctor told her she might have some flu-like side effects, but that they should subside as her body adjusted. She got the entire roster: fevers, night sweats, chills, nausea. But the side effects never subsided. Every week, Tammy carefully timed her injection to have the least impact possible on her family. Her husband would meet her in the evening during a break from his medical school training to give her the injection. Like many people, Tammy said she just couldn’t administer the shots to herself.

“I had a two hour window to get myself back home, get the kids ready for bed and get myself ready for the process,” Tammy said. After each injection, by 8 p.m., she’d be curled up on the couch with chills. Later at night, she’d wake up soaked from fever. In the morning her head throbbed. Immobilized by pain for most of the day, by 2 p.m., she could finally get out of bed.

After three years, it all got to be too much. Her children, now school-aged, required that she be able-bodied and there for them when they needed her. Tammy took herself off Avonex, declaring she’d had enough with the side effects.

Two years went by without any issues. But in 2009, getting up in class to go hand in a paper, her leg gave out, and she collapsed to the floor. Hospitalized briefly, doctors put her on Copaxone, and she spent the rest of the summer relearning how to walk.

A year later, the lesions on her brain were still increasing, so Tammy started yet another treatment, first Tysabri, then Rituxan, both somewhat controversial because of their immunosuppressive effects that can increase susceptibility to serious side infections. But Tammy trusted her doctors and took their advice; on Rituxan for a year, she had no issues and functioned normally.

“ More often than not it’s a sunny day for me. It’s just every once in awhile, those clouds move in, and there goes the sun. But it always comes back... ”

In 2013, she said she got the news she’d been waiting for: the FDA had approved an oral drug to treat MS, Tecfidera. Other oral therapies had been approved previously for MS, but none showed the efficacy or mild side effect profile of Tecfidera.

“I’ll be your guinea pig!” she said, jumping at the chance to escape the ever-present needles. She’s been on the drug ever since, and other than some mild flushing that goes away fairly quickly, she said she has no side effects.

All throughout the readjusting to new treatments, life rolled on for Tammy and her family. She went back to school to learn medical coding and billing. She and her family moved to Texas. Her children grew into teenagers, now 13 and 16. One summer, her husband wanted to visit a new park every day, but that meant they had to get out and be finished before the worst of the midday heat.

“The heat definitely affects me,” Tammy said. “I don’t want to say that my fatigue is because of my MS, and in the grand scheme of things, I don’t see myself as being any more tired than anyone else. But there are times when I feel like a toddler, up early in the morning and crashing right after lunch. That’s me.”

Quick-shot recharges have been her salvation. While working as a dental assistant, she’d divide her 30-minute lunch break into two parts: 10 minutes for actually eating lunch, and 20 for a snooze in the car.

“I’m the queen of the power nap!” Tammy laughs. “But it really got me through the rest of the day. And even still, I feel like I’m constantly setting an alarm clock.”

When she’s sleeping, she said, nothing bothers her, and she considers it her escape, her relaxation from the stresses and strains of every day life. But when she’s awake, she said she can be almost frantic at times, trying to get everything done while she feels able to do so.

“The whole high energy thing, the way I see it is, I have to get this done now,” she said. “I don’t know how long I have until I’m down, so I take advantage of my healthy time. It’s completely carpe diem.”

Story written by Michelle Z. Donahue

Joanne

The symptoms started several minutes after learning of her father’s death in 2003. Worse, she was out of town, alone in a hotel room in New Jersey.

Joanne Richcreek, of Fairfax, Virginia, said her father’s loss had long been expected, but how her body reacted to the stress of hearing he’d actually passed was not.

Read Joanne's Story

“My eyes went bonkers,” she said. “Up, down, sideways. I got the word that my father had died at 7 a.m., and the nystagmus kicked in at 7:05. Amazing.”

Nystagmus, a condition where the eyes make repetitive, uncontrolled movements, was Joanne’s first obvious sign of her MS. She was 51 years old and had never had any major health issues. Though she’s the first to admit her diet isn’t superb, she walks regularly, doesn’t drink and doesn’t smoke.

While still in New Jersey, Joanne called a local doctor for help and told him she thought she had MS. How did she know she had MS, the doctor asked. “It just came out of my mouth,” she said. “I told him I had no idea.” He told her he couldn’t help, and that she just needed to get home — but first she had to bury her father.

Upon returning to Virginia with the help of a nephew, a spinal tap and MRI scan of Joanne’s brain confirmed her hunch: she had MS. Her scan revealed 13 lesions on her brain. MS comes in different types, and Joanne’s is relapsing-remitting. With this form, flare-ups (also known as relapses) are followed by periods of partial or complete recovery (known as remissions).

In an effort to learn more about her diagnosis, Joanne rooted around in her medical file and found a note saying that the doctors considered her MS to be on the severe side — this unnerved her even further.

“They don’t tell you a lot of things unless you ask a lot of questions and do your own research,” she said.

Joanne admits she was overly optimistic in the early days after her diagnosis. When her first round of steroid infusions was finally finished, her home nurse said, “I’ll see you again in a few months.” “No, you won’t,” Joanne responded, unaware that more relapses would be in store for her. The nurse fixed her with a gaze and said, “Yes. You will.”

“[The nurse] knew it was a flare-up,” Joanne said, “when I had no idea it would come back.”

“A cloud is the perfect visual.
Always hovering overhead.”

After her diagnosis, Joanne scanned her past to see if she could find any clues that might have tipped her off sooner that MS was lurking. A number of instances came to mind. Tripping on a curb or wobbling during a walk, then attributed to sheer clumsiness. There was also the time she and a colleague developed Bell’s palsy after a stint at work in a dirty, moldy map room — and she regrets not having kept a copy of the MRI scan from that episode. It may have revealed something doctors weren’t looking for at the time.

But after nearly 15 years of living with MS, she has developed a keen sense of when she is about to have a flare-up, and what to do when she knows she’s “messy,” as she calls it.

Maybe it was a hard day at the hospital thrift shop where she volunteers a few days a week, or her car is too hot after being parked for too long. Voices talking at her, constant and unrelenting. Or Christmas is coming, and someone got her a gift she wasn’t expecting, and, oh God, that means she has to run out and get them something in return.

No matter the trigger, her main recourse is the same: the movies.

“I discovered I need it,” she said. She needs it, she says, to get away. From family, from jobs, from e-mail, from cell phones, from responsibility. “It’s my yoga. It’s dark, not too loud. It’s perfect. I spend time alone, not talking, not engaging. But sometimes, I’ve seen every movie and there are no more to see, and I say, ‘What do I do?!’”

A good snuggle with a New Yorker magazine in a cool, quiet room is a decent alternative.

Walking and keeping as fit as she’s able to is another habit she attributes to keeping her MS in check. She can count on at least two flare-ups a year, but they almost always come at the same times of year: in August, when the Washington D.C. summers are the most humid and brutal, and at the holidays, with all the accompanying stress and overstimulation. So she lays low around those times, and tries to minimize stress.

Her husband, Glenn, also helps keep her on track. He helped her learn how to give herself her copaxone shots, and reminds her to take them when she forgets. He’ll tell her about recent research. He’ll suggest she take a step back when she’s overloaded with work or activities. But the flare-ups come.

“I’ve learned, though, that you have to go through the hell to go through six months of relief,” she said.

Story written by Michelle Z. Donahue

legend

All the data above are calculated from anonymized medical records.

Bars in this color represent statistically significant associations.