MS prognosis age of onset

Multiple Sclerosis: Facts, Statistics, and You

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Multiple sclerosis (MS) is the most widespread disabling neurological condition of young adults around the world. You can develop MS at any age, but most people receive diagnoses between the ages of 20 and 50.

There are relapsing, remitting, and progressive types of MS, but the course is rarely predictable. Researchers still don’t fully understand the cause of MS or why the rate of progression is so difficult to determine.

The good news is that many people living with MS don’t develop severe disabilities. Most have a normal or near-normal lifespan.

There’s no national or global registry for new MS cases. Known figures are only estimates.

Prevalence

Recent findings from a National MS Society study estimate nearly 1 million people in the United States are living with MS. This is more than double the last reported number, and the first national research on MS prevalence since 1975. The society also estimates that 2.3 million people live with MS globally. About 200 new cases are diagnosed each week in the United States, says the MS Discovery Forum.

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Rates of MS are higher further from the equator. It’s estimated that in southern U.S. states (below the 37th parallel), the rate of MS is between 57 and 78 cases per 100,000 people. The rate is twice as high in northern states (above the 37th parallel), at about 110 to 140 cases per 100,000.

The incidence of MS is also higher in colder climates. People of Northern European descent have the highest risk of developing MS, no matter where they live. Meanwhile, the lowest risk appears to be among Native Americans, Africans, and Asians. A 2013 study found only 4 to 5 percent of all diagnosed MS cases are in children.

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Risk factors

Far more women have MS. In fact, the National MS Society estimates MS is two to three times more common in women than men.

MS is not considered an inherited disorder, but researchers believe there may be a genetic predisposition to developing the disease. About 15 percent of people with MS have one or more family members or relatives who also have MS, notes the National Institute of Neurological Disorders and Stroke. In the case of identical twins, there’s a 1 in 3 chance for each sibling to have the disease.

Researchers and neurologists still can’t say with certainty what causes MS. The ultimate cause of MS is damage to myelin, nerve fibers, and neurons in the brain and spinal cord. Together these make up the central nervous system. Researchers speculate that a combination of genetic and environmental factors is at play, but it’s not fully understood how.

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The relationship of the immune system and the brain, however, could be considered a culprit. Researchers suggest the immune system could mistake normal brain cells for foreign ones.

One thing the MS community knows for certain is that the disease is not contagious.

Frequency of MS types

Clinically isolated syndrome (CIS)

CISis considered to be one course of MS, but it may or may not progress to MS.To get a diagnosis of MS:

  • A person has to experience a neurologic episode (typically lasting 24 hours or more) that resulted in damage to the central nervous system.
  • It’s likely this episode will develop into MS.

People who are at high risk of developing MS are found to have MRI-detected brain lesions. There’s a 60 to 80 percent chance of receiving an MS diagnosis within a few years, estimates the National MS Society. Meanwhile, people at low riskdon’t have MRI-detected brain lesions. They have a 20 percent chance of receiving an MS diagnosis in the same amount of time.

Relapsing-remitting MS (RRMS)

RRMS is characterized by clearly defined relapses of increased disease activity and worsening symptoms. These are followed by remissions when the disease doesn’t progress. Symptoms may improve or disappear during remission. Approximately 85 percent of people receive a diagnosis of RRMS at first, says the National MS Society.

Secondary progressive MS (SPMS)

SPMS follows an initial RRMS diagnosis. It sees disability gradually increase as the disease progresses, with or without evidence of relapse or changes in an MRI scan. Occasional relapses may occur, as will periods of stability.

Untreated, about 50 percent of people with RRMS transition to SPMS within a decade of the initial diagnosis, estimates a 2017 study. About 90 percent of people transition within 25 years.

Primary progressive MS (PPMS)

PPMS is diagnosed in about 15 percent of people with MS, estimates the National MS Society. People with PPMS experience a steady progression of the disease with no clear relapses or remissions. The rate of PPMS is equally divided between men and women. Symptoms usually begin between the ages of 35 and 39.

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A high percentage of MS cases don’t progress. These may fit into a subgroup with a “very stable benign” form of the disease, per a 30-year study presented in 2017. Researchers say it’s possible for people to remain in the RRMS phase for 30 years.

At the other end of the spectrum, a 2015 study found about 8 percent of people with MS develop a more aggressive course of the disease. It’s known as highly active relapsing-remitting multiple sclerosis (HARRMS).

Symptoms and treatment

Symptoms vary a great deal from one person to another. No two people have the same combination of symptoms. This, of course, complicates identification and diagnosis.

In a 2017 report, one-fifth of European women surveyed received misdiagnoses before eventually receiving an MS diagnosis. The average woman was found to go through about five visits with a healthcare provider over the course of six months before reaching a diagnosis.

According to the MS Foundation, symptoms can impact the mind, body, and senses in a number of ways. These include:

  • blurred or double vision, or total vision loss
  • hearing impairment
  • reduced sense of taste and smell
  • numbness, tingling, or burning in limbs
  • loss of short-term memory
  • depression, personality changes
  • headaches
  • changes in speech
  • facial pain
  • Bell’s palsy
  • muscle spasms
  • difficulty swallowing
  • dizziness, loss of balance, vertigo
  • incontinence, constipation
  • weakness, fatigue
  • tremors, seizures
  • erectile dysfunction, lack of sexual desire

There’s no single “MS test.” To receive a diagnosis, your doctor needs to collect your medical history and perform a neurological examination and a series of other tests. Tests may include:

  • MRI
  • spinal fluid analysis
  • blood tests
  • evoked potentials (such as an EEG)

Since the exact cause of MS is still unknown, there’s no known prevention.

There’s also no cure for MS yet, but treatments can manage symptoms. MS medications are designed to lessen the frequency of relapses and slow the progression of the disease.

There several disease-modifying medications approved by the U.S. Food and Drug Administration to treat MS. They include:

Tip

  • These medications aren’t approved for use during pregnancy. It’s also unclear if MS medications are excreted through breast milk. Talk to your doctor about your MS medications if you’re considering becoming pregnant.

Other surprising facts about MS

People with MS can safely carry a baby to term. Pregnancy doesn’t generally affect MS in the long term.

MS has been found to affect decisions about pregnancy, though. In a 2017 survey, 36 percent of women participants decided not to have children at all or postponed the timing of getting pregnant due to their MS.

While people with MS often experience a relief from symptoms during pregnancy, about 20 to 40 percent have a relapse within six months of giving birth.

MS is an expensive disease to treat. A 2016 economic analysis of MS found the total lifetime costs per person with MS to be $4.1 million. The average yearly healthcare costs range from $30,000 to $100,000 based on the mildness or severity of the disease.

10 Surprising Things That Increase Your Risk of Multiple Sclerosis

Multiple sclerosis is pretty quirky as far as diseases go—and some of the nuances surrounding it continue to baffle experts. What they do know for sure: MS is an autoimmune disease that occurs when the body misfires against its own central nervous system. A few things linked to a higher risk:

1. Your gender

Montel Williams and a few other high-profile male celebrities have been diagnosed with MS, but by and large, MS disproportionately strikes women, says Nancy L. Sicotte, MD. And the gender gap is growing: “It used to be two women to every one man, but several new studies suggest that the ratio is approaching 4-to-1,” she says. Even though the disease is more common among women (they are also more likely to get MS at a younger age), it tends to be more severe in men, adds John Rose, MD, professor of neurology at the University of Utah.

RELATED: Selma Blair Stepped out with a Cane for the First Time Since MS Diagnosis

2. Where you live

People who dwell nearer the earth’s poles (think Australia, New Zealand, Canada and Iceland) are more likely to get MS than those who live closer to the equator. This is true in the United States, too: MS is about twice as prevalent in North Dakota as in Florida, for example. Researchers believe that vitamin D, or lack thereof, is the reason. Our bodies produce D in response to sunlight, so people far from the equator make less, especially during the long, dark winter months.

RELATED: Could You Have MS? 16 Possible Symptoms

3. Having moved as a child

If your family relocated when you were growing up, your risk of MS may change to reflect your new homeland, whether you go from a low-risk area for MS or vice versa. However, this is true only if you moved before the age of 15.

4. Your DOB

Strange but true: Finnish researchers found that spring babies have a higher risk of MS. (In the study, an April birth was linked to a 9.4 percent higher MS risk, while those born in November had an 11.1 percent lower risk.) A possible explanation, according to Dr. Rose: “If your mother was pregnant with you through the winter, her levels of vitamin D during pregnancy may have been low.”

RELATED: 8 Reasons Your Leg Feels Numb

5. Your ethnicity

MS is more common among Caucasians, particularly those with northern European ancestry. Some groups, such as people with African, Asian, Hispanic and Native American ancestry—, seem to be at lower risk, although they can still get the disease. MS is almost unheard of among some groups, including Australian aborigines and New Zealand Maoris, according to the National Multiple Sclerosis Society.

6. Your smoking status

We all know that puffing is bad news and that it increases the odds of lung cancer and heart attack or stroke. But did you know it’s a well-established risk factor for MS, too? Smokers and ex-smokers are more likely to get MS than people who never smoked, and the more cigarettes you’ve had, the greater your chances (people who smoke at least two packs a day have a fivefold greater risk). While you can’t erase the past, quit if you haven’t already: MS may progress more quickly in current smokers, according to research.

RELATED: 6 People Explain What It’s Really Like to Live With MS

7. Your age

You can be diagnosed with MS at almost any time, from childhood right on up to your years as a senior citizen, but it’s most liable to strike from age 20 to 50. “MS is not an all-comers’ disease,” says Carrie Lyn Sammarco, DrNP. “We don’t tend to see it in children, although it can occur.”

RELATED: Top 10 Myths About Multiple Sclerosis

8. You’ve had mono

Many germs have been studied as possible MS triggers, but the results have been mixed. There is, however, a growing body of evidence that Epstein-Barr virus (EBV), which causes mononucleosis, is a culprit. A Journal of the American Medical Association study found higher levels of EBV antibodies in people with MS. (About 90 percent of people are infected with EBV at some point, although not all get symptoms.) And researchers at Wayne State University in Detroit found that a history of EBV is more common among people with MS. While it’s not certain whether the virus causes MS, “a relationship is clearly present,” they concluded.

9. You have another autoimmune condition

Autoimmune diseases tend to cluster, so if you have one, you may develop others. That means if you have inflammatory bowel disease or type 1 diabetes, you may have a slightly higher risk of being diagnosed with MS, too. (The link isn’t as strong with some autoimmune diseases, such as lupus and rheumatoid arthritis.) “Genes seem to haywire the autoimmune system,” Dr. Rose explains.

RELATED: 5 Things Linked to a Higher Risk of Multiple Sclerosis

10. Your family tree

While environmental factors have an impact on your chances of developing this disease, so do genetics. “If a mom or dad has MS, their children have between a 5 and 10 percent chance of getting it,” Dr. Rose says. The MS risk is 1 in 750 for most people, 1 in 40 for those with close family members with the disease and 1 in 4 for those with an identical twin who has it.

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How Age Affects Multiple Sclerosis Symptoms and Progression

MS in Children

Up to 10 percent of MS cases are diagnosed in children and teens, according to the International Pediatric MS Study Group. MS in children is generally understood to be the same disease as MS in adults.

“Children experience similar MS symptoms to adults, including motor symptoms and weakness, but children tend to have more relapses than adults,” Dr. Chitnis says.

“There is a slower course of progression, and kids have less disability early on in their disease course,” she adds.

Still, Chitnis says, it’s important to note that a 30-year-old with pediatric-onset MS will have more disability than a 30-year-old with adult-onset MS. “Better treatment strategies are required in kids,” she says.

Recently there have been new initiatives to conduct clinical trials in children with MS, to better understand effective treatment options in this age group.

MS After 50

Only a small percentage of people with MS receive their diagnosis after age 50. In some cases, these people have late-onset MS. But for some, the diagnosis represents a delayed identification of years — or even decades — of unrecognized symptoms.

Mental and physical changes associated with aging can be similar to, or overlap with, symptoms of MS. Such symptoms may include muscle weakness, balance problems, fatigue, visual changes, cognitive impairment (such as problems thinking and remembering), and sleep disturbances.

Related: When MS Strikes Later in Life

Older people with MS are also more prone to urinary tract infections, pneumonia, septicemia (infection of the blood), and cellulitis (bacterial skin infection) than peers who don’t have MS, according to the NMSS.

The combination of aging and MS-related symptoms can exacerbate any of the health problems a person has. For instance, people with mobility problems due to MS may have difficulty traveling to and from healthcare appointments, so they may forgo these trips and miss needed care — both for their MS, and for any other medical conditions.

Decreased mobility can also be hard on the heart: Being less active is a known risk factor for heart disease.

Research is mixed on the emotional effects of MS on older people. A study published in September 2015 in the journal Psychology, Health & Medicine found evidence suggesting that older people with MS experience less psychological distress in response to impaired physical functioning than younger people with MS.

But a study published in April 2014 in the Journal of Psychosomatic Research found that people age 65 and older who have MS were four times as likely to engage in suicidal thoughts as younger people with MS.

At any age, depression and thoughts of suicide shouldn’t be ignored. If you or a friend or family member who has MS experience signs of depression or are thinking about suicide, seek help from your doctor or a mental health professional.

Effect on Life Span

Ultimately, MS is a chronic illness, not a terminal one. While it can slightly shorten life span, Chitnis says the reduction is unsubstantial: “I have seen many MS patients who live to be 70 or 80 years old,” she says.

A study published in May 2015 in the journal Neurology that used health data from Manitoba, Canada confirms Chitnis’s observation. It found that in the population studied, people with MS had a median life span of 75.9 years, while for people without MS it was 83.4 years.

According to the study, “The most common causes of death in the MS population were diseases of the nervous system and diseases of the circulatory system. Mortality rates due to infectious diseases and diseases of the respiratory system were higher in the MS population.”

Beth W. Orenstein also contributed to this article.

I Was Diagnosed with MS at 31

Finding out I had a condition that I would face the rest of my life— and one that generally gets worse— was overwhelming to say the least. Hats not even a strong enough word. But I’m the perfect middle child; I’m a fixer and a problem solver. I liked doing research and overcoming obstacles and so initially I thought I would immerse myself in support groups and seminars and workshops. I remember the first seminar I went to on living with MS, which was given by local health professionals. It was raining and my husband dropped me off at the door. By the time he had parked the car and got back to me, I told him we needed to leave. I wasn’t emotionally ready for it. A lot of the participants were using canes or walkers or wheelchairs and it hit me that that might be me one day and I wasn’t ready for it yet.

Now, five years later, when I have symptoms or a bad day or days, it is still so incredibly frustrating. But I decided it wasn’t going to define me or dictate my life. I would just have to manage it and be aware of different circumstances that I go through. For instance, I’m really sensitive to temperature changes. Heat really knocks me out and turns my body to Jell-O. We have really hot summers here and even things like a long shower or drinking hot chocolate or soup can affect me. So, if we go for a walk or bike ride or go somewhere like a fair, I always have ice packs that you can squish to get cold. I have a cooling vest that I can recharge. I just have to make sure I have a way to cool down.

RELATED: Facial Numbness Was My First MS Symptom

I am the executive director at the Milwaukee Animal Rescue Center, and I had one doctor suggest early on that I cut back at work. I knew that would mean shutting things down. If I had another job, it would probably be easier to stay in bed when I need to, but the animals don’t care if I don’t feel well. Knowing there are people counting on me inspires me to be at work even when I am not feeling my best. I have a really good group of volunteers and they know that if I can do something, I will. If I need to ask for help, there are always people there to help me out. I have a lot of support. My sisters and mother live nearby and I have a lot of great friends. You learn very quickly whom you can depend on and who will help you without having to repay them every time. I was at a restaurant with a friend once and I knocked over a glass. Sometimes I do that— or drop a fork— and you can look intoxicated. I looked over at my friend and sighed and she knocked hers over and we just laughed.

As told to Tammy Worth

6 Things I Wish I Knew When I Was Diagnosed With MS

My name is Rania, but I’m more commonly known these days as miss anonyMS. I’m 29, live in Melbourne, Australia, and I was diagnosed with multiple sclerosis (MS) in 2009 at the age of 19.

It’s quite a funny thing when you’re diagnosed with an incurable disease that leaves you looking fine on the outside but wreaks havoc on the inside.

Your brain controls your body through nerve impulses, and MS attacks the nerves that send those messages. This, in turn, alters how your body functions. So, I’m sure you can imagine just how inconvenient this disease is.

I’ve tripped on thin air in public way too many times to count because my leg decided to stop working. One time I fell down so hard to the concrete that I ripped my pants.

I couldn’t get up because those silly nerves in my brain decided to short circuit, leaving me on the floor with people wondering: How did she just fall so bad in flat shoes with nothing around her? I laughed and cried while trying to explain why my leg wasn’t working.

The inconvenience of this disease continues with involuntary muscle spasms.

I’ve kicked people under tables, tipped my coffee on people, and looked like I was auditioning for a horror movie in the middle of the shopping center. I also look like I’m part of a zombie apocalypse on the regular from the horrific fatigue it causes.

Jokes aside, an MS diagnosis is a lot to handle, especially at the young age of 19. Here are all of the things I wish I knew sooner.

1. Ultimately, treatment will help

When I was first diagnosed with MS, there weren’t many forms of treatment available. I had to inject myself four times a week while not being able to feel the right side of my body.

I used to cry for hours, not being able to inject myself with medication because I’d anticipate the pain.

I wish I could go back and tell that girl who would sit with the injector on her leg — which was covered in welts and bruises from the needles — that treatment would come so far that you won’t have to inject yourself anymore.

It’d improve so much that I’d regain the feeling in my face, arm, and leg.

2. Strength comes from challenges

I wish I knew that you learn your greatest strengths when you’re faced with the worst of life’s challenges.

I experienced mental and physical pain from injecting myself, I’ve lost feeling in my limbs, and I’ve lost overall control of my body. Out of these things, though, I learned my greatest strengths. No university degree could teach me my strengths, but the worst of life’s challenges could.

I have a resilience that can’t be beat, and I have a smile that doesn’t fade. I’ve experienced real darkness, and I know how lucky I am, even on a bad day.

3. Ask for support

I wish I could tell myself that I absolutely need support, and it’s more than OK to accept it and ask for it.

My family are my absolute everything. They’re the reason I fight so hard to be well, and they help me with cooking, cleaning, or gardening. I didn’t want to burden my family with my fears, though, so I turned to an occupational therapist who specializes in MS and never looked back.

Being able to talk to someone other than my family helped me really accept the cards I’d been dealt and deal with the emotions I was feeling. This is how my blog miss anonyMS began, and now I have a whole community of people to share my good and bad days with.

4. Don’t compare your diagnosis to others with MS

I wish I could tell myself not to compare my diagnosis to other people’s diagnoses. No two people with MS will share the same exact symptoms and experiences.

Instead, find a community to share your concerns and find support. Surround yourself with those who understand exactly what you’re going through.

5. Everyone copes in different ways

At first, my way of coping was to pretend that I was fine, even though I became a figure of myself that I didn’t recognize. I stopped smiling and laughing and buried my head in my studies because that was the best way I knew how to cope. I didn’t want to burden anyone with my illness, so I lied and told everyone I loved I was fine.

I lived like this for many years until one day I realized I couldn’t do it alone anymore, so I asked for help. Since then, I can truly say I’ve found my way of living well with MS.

I wish I knew that coping is different for everyone. It’ll happen naturally and at its own pace.

One day, you’ll look back and know you’re the strong warrior you are today because you walked through that war and continue to fight that battle. You’ll come out stronger and wiser each time, ready to conquer again.

6. Everything will be OK

I wish that my 19-year-old self knew to truly believe that everything would be OK. I would’ve saved so much stress, worry, and tears.

But I know it’s all about the process. Now, I can help those who are dealing with some of the same experiences I went through and give them the information they need.

It really will be OK — even through all the storms — when it’s too dark to see the light and when you think you have no more strength to fight.

Takeaway

I never thought something like an MS diagnosis would happen to me, and yet I was wrong. It was a lot to comprehend at the time, and there were many aspects of the disease that I didn’t understand.

Over time, however, I learned how to cope. I learned to see the good in every bad. I learned that perspective is your best friend, and I learned how important it is to be grateful for the simple things.

I might have tougher days than the average person, but I’m still so lucky for all I have and for the strong woman this disease has forced me to be. No matter what life throws at you, with a good support system and a positive mindset, anything is possible.

Rania was diagnosed with MS at age 19 while in her first year of university. In the first years of being diagnosed and navigating her new way of life, she didn’t speak much about her struggles. Two years ago, she decided to blog about her experience and hasn’t been able to stop spreading awareness for this invisible disease since. She started her blog miss anonyMS, became an MS Ambassador for MS Limited in Australia, and runs her own charity events with all proceeds going to finding a cure for MS and support services to help people living with MS. When she’s not advocating for MS, she works for a bank where she manages organizational change and communications.

Vollmer adds that people born in cities and those in upper income brackets tend to develop MS more often. The hypothesis is that living in a cleaner, man-made environment (versus close to animals and dirt), the immune system may not develop all of the regulatory circuits it should, causing it to malfunction.

Multiple sclerosis can be managed if it’s caught early, which is why it’s important to recognize its symptoms.

Vollmer calls MS a relatively invisible disease, since many of the symptoms can only be felt by the patient. “Oftentimes, family member and friends may not know what they’re going through.” The symptoms of the disease are common symptoms of many other less serious ailments, which makes MS difficult to spot. “They’re often subtle enough that healthcare providers miss it,” Vollmer adds. He also notes that when patients present with their first symptoms, it’s very likely they’ve had the condition for a decade already and have already suffered significant brain volume loss—this atrophy is the strongest predictor of disability, so it’s key to catch it early. Where in the brain the attacks occur can drastically change when symptoms pop up and how debilitating they are.

The most common symptoms of MS are: fatigue, depression or anxiety, numbness or tingling in the legs, weakness, vision problems, loss of motor control, and loss of bladder control. MS can also cause sexual dysfunction—specifically, make you unable to achieve orgasm “because there’s not enough sensory input back to the spinal cord,” Vollmer explains. Fatigue and depression or anxiety can be the earliest signs and precede a diagnosis by years. Vollmer recommends that any young woman who has serious fatigue that interferes with the ability to function on a daily basis and can’t figure out a reason why, should get an MRI. “It’s not invasive and it’s the single most effective way to check this diagnosis,” he says. If you’re depressed, achey, and just don’t feel like yourself for months at a time, see your doctor.

Multiple sclerosis is treatable, but there’s some debate in the medical community on the best way to approach it.

“It’s one of the most treatable disease in neurology now” as long as it’s diagnosed early, before too much lasting brain damage occurs, Vollmer says. Recent MS research has made big advances in both determining the causes of the disease and how to treat it most effectively.

There’s typically three aspects of treatment: immunological drug therapies (which help regulate the immune system), symptomatic drug therapies (which treat specific symptoms, like pain), and lifestyle changes. “If we can get people to maintain healthy lifestyles, they can drastically improve outcomes,” Vollmer says. That’s because healthy habits, like exercising regularly, can help the brain make new connections and build strength.

There’s a big debate among neurologists about whether to approach treatment by using the most effective, often riskier drugs right off the bat (early effective therapy), or starting with the less effective, yet safer ones, and working up if there’s no progress (escalation therapy). “Most of the world does escalation therapy, seeing if patients fail on old drugs before considering using newer drugs,” Vollmer explains. “Most MS centers in this country do the opposite—we select the most effective therapy and intervene as early as we can.” The problem is that newer drugs are more complicated, riskier, more expensive, and often have insurance limitations. “Bottom line is, try to get at least one second opinion to make sure you understand your options,” Vollmer says.

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