MS is a chronic neurological condition that affects the central nervous system, which is comprised of the brain and spinal cord. In the CNS, nerve fibers (called axons) are protected by a fatty layer of insulation called myelin. Myelin allows nerve signals to travel properly.
In MS, overactive immune cells cause inflammation, which damages the myelin. This results in a loss of myelin – called demyelination – and some degree of axonal damage. Wherever the myelin is destroyed, a damaged area of white matter known as a lesion (or plaque) will occur. Over time, hardened scar tissue develops at the lesion site. This hardened scar tissue, or sclerosis, may develop at multiple sites throughout the CNS, hence the name multiple sclerosis. This scarring disrupts the transmission of nerve signals that communicate a desired action from the brain, through the spinal cord, to various parts of the body.
Imagine this: you disconnect your cell phone from its charger as you get ready for a busy day. But even though it has been connected all night, you notice the battery is only partially charged. You look at the cord and notice a spot where the insulation has been stripped away and the wires inside are exposed. Because the path by which the current travels is damaged, not all of the electricity sent from the outlet reached its target, your phone.
This analogy is helpful in understanding MS. When signals from the brain travel along nerves where the insulation has been damaged or lost, those signals may be interrupted or distorted, producing the many symptoms associated with MS.
No one knows the direct cause of MS – yet.
There is a widespread belief among doctors and researchers that there is no single cause of MS. Instead, it is believed that MS is the result of a combination of several different factors. A tremendous amount of research is being done to find out what role these different factors play and just how large their effect might be.
Studies are ongoing in the following areas:
MS is generally considered an autoimmune disease. This means that the immune system, which normally protects us from disease and infection, reacts against certain proteins in the body as if they were foreign. In other words, the body mistakenly attacks and harms itself.
In recent years, researchers have identified the role of certain immune cells that trigger MS attacks, as well as some of the factors that cause these cells to do so. They have also noted some sites (or receptors) on the attacking cells that appear to be drawn to the myelin, beginning the destructive process.
Environmental studies suggest that some factor – probably infectious – must be encountered before the age of 15 in order for MS to develop later in life. Several viruses and bacteria have been, or are being, studied to determine if they may trigger MS, but none have been proven to do so yet. The strongest evidence so far points to some involvement of the Epstein-Barr virus (EBV).
Studies have shown that people born in a geographic location with a high incidence of MS, who move to a geographic location with a lower incidence of MS during childhood, will acquire the lesser risk associated with their new location. This suggests that exposure to some environmental factor or factors prior to puberty may predispose a person to develop MS later in life.
Another possible environmental factor is sunlight exposure, as it relates to vitamin D. When exposed to sunlight, your body naturally creates vitamin D, which is known to play a role in immune function and may help protect against MS. Epidemiological studies show more frequent cases of MS in regions that are farther away from the equator, where people have less sunlight exposure and lower levels of vitamin D.
New techniques are being used in an effort to identify the genes that may be involved in MS development. While some autoimmune diseases are caused by one or two malfunctioning genes, MS appears to involve defects in several different genes, each one with only a modest effect.
While MS is not hereditary, having a family history of MS, particularly in a parent or a sibling, does make a person about 2.5 percent more likely to develop MS. In identical twins, if one twin develops MS, the other twin has a 30 percent chance of also developing the disease.
So, while being directly related to someone with MS does raise your risk, it is still a relatively low risk, which strongly suggests that other factors play a larger role in MS development and your genetics are simply a piece of the puzzle.
MS can affect people of any age, any gender, and any ethnic background. However, some people do have a higher risk.
MS is significantly more common in women than men, by a ratio of as much as 3 to 1. It appears more frequently in Caucasians than in Hispanics or African Americans, and is relatively rare among Asians and certain other ethnic groups. MS is most commonly diagnosed in individuals between the ages of 20 and 40, although it can develop in young children, teens and older adults.
The risk for MS among the general population is relatively low. Individuals with a parent or sibling who is diagnosed with MS have a slightly increased risk.
In countries further from the equator, an increase in MS cases is noted. In the United States, the northern states (above the 37th parallel) have twice as many cases of MS as the southern states.
The number of people with MS in the United States is estimated to be between 300,000 and 400,000. Worldwide, an estimated 2.5 million people have MS.
However, many experts doubt the accuracy of these figures. The estimate for the United States is based on scientific research done to establish the prevalence of MS in the 1970s, a time before MRI was introduced as a diagnostic method and before any disease-modifying treatments were approved for use. With these advancements, it is likely that more people are being accurately diagnosed, and that people with MS are living longer. For this reason, some think that the number of individuals affected by MS may be significantly higher.
Diseases that affect fewer people than others may be considered a lower priority for funding by government agencies and private foundations that support research and support services. If the actual number of people with MS is significantly more than is being reported, research and assistance programs may be severely underfunded. Our organization's experience indicates this is the case; the need for services is always greater than the available funding.
Currently, doctors are not required to report new MS cases to the Centers for Disease Control and Prevention, and, unfortunately, there is no other plan in place to properly research the true prevalence of MS. Through the MS Coalition – a group made up of MS advocacy organizations – MS Focus and our fellow members are working together to solve this issue.
Because MS symptoms can affect almost any part of the body, there are no specific warning signs linked to disease onset. However, some symptoms are more common than others as the first signs of MS.
If you or someone you know experiences these symptoms, it is important to discuss them with your healthcare provider.
There is no single test that can be used to definitively diagnose a person with MS. Diagnosis involves both clinical evidence (something that a doctor observes during a neurological examination, or learns from a patient's history) and the results of certain tests, such as MRI, spinal tap, or evoked potentials.
A definite MS diagnosis has these requirements:
For some people, no tests beyond medical history and a neurological exam many be necessary to diagnose MS. However, most physicians will not rely entirely on this type of evaluation and will do at least one other test to confirm the diagnosis. Even a clear-cut diagnosis will usually be confirmed with MRI. In other cases, however, even the combination of clinical evidence and MRI may be insufficient to definitively diagnose MS and further testing may be ordered.
After examination and testing, the doctor will examine all available evidence and determine whether there is enough information to make a diagnosis of clinically-definite MS, or to rule out MS altogether. If not, a person may be diagnosed with Clinically Isolated Syndrome (CIS), which is defined by a single neurological episode that is consistent with MS, or with a case of "probable MS" if the evidence strongly suggests it. These individuals may be asked to follow up for a repeated round of testing after time has passed or new symptoms appear to confirm their diagnosis.
Diagnosis of MS typically involves a clinical and neurological examination, and MRI scan. Additional tests may or may not be necessary.
The examination begins with a careful inquiry into your medical history. You will be asked about your current symptoms, and any you may have previously experienced but overlooked. The physician is also likely to ask about:
The doctor will next perform a neurological examination. This is a series of simple tests typically done in a normal exam room. It involves checking such things as:
When MS is suspected, a few particular tests are likely to be added. The doctor will check for Babinski's reflex, an upward movement of the big toe when the sole of the foot is stimulated, and L'Hermitte's sign, a painful sensation when the neck is moved in a certain way.
The doctor may then order blood tests or other lab work to rule out conditions that mimic MS, or check for risk factors, such as low vitamin D.
MRI (which stands for magnetic resonance imaging) is the most sensitive method available to detect areas of demyelination (damaged myelin surrounding the nerves). MRI is safe and accurate, providing the clearest evidence of white matter lesions in the central nervous system (CNS).
Typically, your doctor will order an MRI "with contrast." An injection of a sort of dye called gadolinium is given, which allows active lesions in the brain to be more clearly seen.
MRI is a painless and noninvasive technology that uses a powerful magnet. (If you have a pacemaker or other medical implants, be certain to tell your doctor since this may make you ineligible for MRI.) You will be asked to lay on a narrow table wearing a hospital gown or clothing that contains no metal. Your head may be secured so it doesn't move. The table will slide into the MRI machine. You will hear thumping, tapping, and other noises, so if you are sound-sensitive, consider asking if you may wear earplugs.
MRI machines come in different strengths. Open MRI machines are not usually of sufficient strength for MS diagnosis. If you experience claustrophobia, speak to your doctor in advance about treatment.
A small percentage of people who have MS do not show evidence of lesions on a first MRI.
If an examination, lab testing, and MRI fail to provide enough information to make a diagnosis, or if you are ineligible for MRI, your doctor may order additional tests, including evoked potentials and lumbar puncture.
Evoked potential tests are painless procedures where electrodes are placed on the head and body. Response is recorded to determine where delays in nerve transmission occur. These tests can take as little as half an hour and are often conducted in the doctor's office. There are three types of these tests:
Lumbar puncture (often referred to as a spinal tap) allows for spinal fluid analysis. A needle is inserted into the spine and a small amount of cerebrospinal fluid is removed. The analysis of this fluid can help rule out infectious diseases that might mimic MS, and can show certain abnormalities that are present in a large percentage of samples from people with MS.
After a lumbar puncture, you may be advised to remain lying down for a time, and not to engage in strenuous activities for a day or two. Up to 25 percent of people who have lumbar punctures experience headaches following the procedure, ranging from mild to severe.
Following the completion of all testing your doctor prescribes, your doctor will look at the picture that emerges from the combined results to determine if there is sufficient evidence for a diagnosis of MS. At a follow-up visit, the doctor will discuss the results with you and advise you about next steps in your diagnosis or treatment plan.
MS is often difficult to diagnose. If your doctor doesn't feel there is sufficient evidence to make a diagnosis after all available testing methods have been tried, it can be frustrating. Sometimes, it helps to get a second opinion from an MS specialist. At other times, all you can really do is wait to see if the picture becomes clearer over time.
No. While NMO and MS share some similarities, they are not related diseases.
Neuromyelitis optica (NMO, formerly called Devic's Disease) is a demyelinating condition that was once thought to be an aggressive variant of MS, until the discovery of an antibody in the blood of individuals NMO. The antibody is present in about 70 percent of people with NMO, but not found in people with MS.
NMO is often misdiagnosed as multiple sclerosis. Like MS, NMO leads to loss of myelin and can cause attacks of optic neuritis and myelitis (inflammation of the spinal cord.) However, NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brain stem involvement.
For more information about NMO, visit the Guthy Jackson Foundation.
No two cases of MS are exactly the same. Each person will have a different set of symptoms, and the timing and severity of relapses, as well as disease progression, will differ from person to person. However, doctors and researchers do use certain terms to characterize the nature of a person's condition.
To better develop appropriate management plans, MS has typically been divided into classifications, or types. At diagnosis, a person is most likely to be classified as having one of the following:
Those diagnosed with RMS may eventually transition to a fourth category:
Over time, healthcare providers will monitor whether a person’s classification changes and may describe the state of the person’s MS with these terms:
MS can be a very difficult disease to diagnose. Typically, a person with MS will have lesions visible on MRI, but not always. Typically, a person with MS will have abnormalities in their spinal fluid, but not always. Typically, a person with MS will have a history of symptoms that demonstrate a pattern consistent with MS, but not always. It is this unpredictability that makes the process so challenging. There is no single test, and no specific combination of tests, that will always correctly diagnose multiple sclerosis.
When tests are inconclusive and the doctor doesn't have answers for you, it's easy to wonder whether the symptoms you are experiencing are "all in your head." At times, well-meaning medical professionals may even foster that idea by suggesting what you are experiencing might be "just stress." While we can all benefit from reducing our stress, MS experts know that the disease can often take years to diagnose, as can several other autoimmune diseases with similar symptoms. If you continue to experience the problems that led to you seeking a diagnosis, don't give up on trying to find answers.
It can be helpful to seek a second opinion from a doctor who specializes in the diagnosis and treatment of multiple sclerosis. These experts may recognize signs that may not be apparent to others. However, sometimes only time will truly tell if a person has MS. Tests may need to be repeated after a specified period of time, or when new symptoms appear.
Today, many doctors prefer to treat cases of "probable MS" as though their diagnosis was certain. Early treatment can slow the progress of the disease and potentially prevent relapses. If your doctor cannot provide a definitive diagnosis, discuss whether the evidence is strong enough to merit starting treatment.
Sadly, some individuals remain in limbo for years, suffering from symptoms but unable to get diagnosed. Don't let the lack of a diagnosis stop you from seeking support. Consider joining a support group for the chronically ill, or specifically for people with MS. Not having a diagnosis should not, and can not, stop you from relating to those with MS or sharing and receiving support.
Unfortunately, there is no simple answer to this question.
Multiple sclerosis is unpredictable. It can vary widely from person to person, and each person's condition can change from day to day. So, while there can be similarities in symptoms and disease course between different people, no two people experience MS exactly the same way. However, there are some general guidelines for what you can expect.
Most people with MS can expect to experience relapses. A relapse (also called an exacerbation or "flare-up") is a temporary worsening of symptoms lasting more than 24 hours. Relapses are caused by inflammation within the central nervous system, and more severe relapses are typically treated with steroids or ACTH.
People who experience relapses are also likely to experience pseudo-relapses. This is a temporary worsening of symptoms, lasting less than 24 hours, caused by something other than CNS inflammation. Common causes are heat intolerance, infection, and illness.
Progression is the accumulation of lasting symptoms over time. This can happen as a result of relapses, when a symptom doesn't entirely go away when the flare-up has ended. But progression can also happen independently of relapse. In this case, a symptom often comes on slowly, getting more noticeable as time goes on.
Some symptoms will come and go. You may feel fine today, but find that your symptoms are 'acting up' tomorrow. Or you may feel fine in the morning, but be doing poorly by afternoon.
Worsening of a symptom you have previously experienced doesn't necessarily signal a relapse, pseudo-relapse, or disease progression. Sometimes, other health factors contribute, or several symptoms have a synergistic affect, each making the other worse. For example, lack of sleep, poor nutrition, or stress can contribute to chronic fatigue. Fatigue can contribute to cognitive dysfunction and worsen emotional symptoms, such as depression. When these problems persist more than a day with no other apparent health factors as the cause, or if you experience new or severe symptoms, contact your doctor.
The prognosis (or future outlook) for an individual with MS depends upon the type of MS they have, and the severity and frequency of relapses and/or progression.
In the broadest terms, those diagnosed with progressive MS may expect to experience a steady worsening of symptoms – frequently affecting mobility. However, the rate of that progression varies widely. One study followed people with progressive MS over several decades and noted that at 25 years after diagnosis, a quarter of the participants were still able to walk.
For those with relapsing MS, the prognosis is equally variable. Within 25 years, the majority will transition to the secondary progressive form of the disease, but that does not necessarily equate to developing severe disability. Often, they will not require a wheelchair or other mobility aid any earlier than their peers who do not have MS.
In some cases, the course of MS during the first five years may provide a clue to the progression of the disease during the next 10 years. Recent studies indicate that 90 percent of patients with minimal disability at five years after onset were still walking without an assistive device after 15 years.
There are steps a person can take to fight back against the disease, prevent relapses, and delay progression. These include beginning treatment as early as possible and adhering to their medication schedule, managing their sleep and stress effectively, eating well, staying active, and going tobacco-free.
Yes. But, like the many other MS symptoms, pain can be unpredictable and can stem from a number of reasons. MS-related pain may be constant over a long period of time, or it may come and go randomly, with or without other symptoms present.
At one time, doctors mistakenly believed that MS was a painless disease. Thankfully, the medical community now has a better understanding of how MS can cause pain and how to treat it.
The first step to treating the pain is to identify the cause.
There are two types of pain associated with MS - Primary and Secondary.
Primary pain symptoms are directly caused by the disease itself. Primary pain occurs when nerves are damaged or inflamed. Some examples are:
In general, primary pain is treated with medications that affect the nerves themselves. These drugs may be classed as anti-seizure or antidepressant medications, but rest assured, they are commonly and effectively used to treat pain in MS.
Secondary pain symptoms are often defined as "side effects" of other symptoms or treatment(s). Some examples are:
Treatment for secondary pain typically begins with treatment of the underlying cause. Secondary pain also often responds to NSAIDs – over-the-counter pain relievers.
Physical therapy has been know to help alleviate pain from secondary symptoms such as spasticity, from falling due to balance issues, or pain from an improperly-fitted assistive device. In cases of chronic pain, referral to a pain management specialist may be helpful.
If you have MS and you are in pain, do not always assume that MS is definitely the cause, and definitely do not believe that simply living with the pain is your only option.
For acute pain, see a medical professional as soon as possible. For other types of pain, keep a log of when and where you experienced it, how severe it was on a 1-10 scale, and how you would describe it: sharp, dull, burning, aching, cramping, sudden, etc. Also make a note of anything that seems to make the pain better or worse. Then, discuss the log with your doctor. This will help to identify the cause of the pain, determine whether it is indeed MS-related, and know how best to treat it.
While some people with MS must eventually use a wheelchair to maintain their independence, the possibility is less likely than you may think.
The course of MS can vary widely, and it is impossible to predict the nature, severity, or timing of progression in a given person. Some people with MS will have a more progressive disease course than others. Yet, history studies have indicated that, absent of any treatment, only about one-third of people with MS require a wheelchair or mobility aid after 20 years with MS.
Today, treatments are available to slow the progression of disability. Some people with MS respond quite well and may have no progression for many years. For others, the treatment may slow, but not stop the progression. With treatment, your chances of requiring a wheelchair can drastically shrink below that one-third mark. It is important to be active, and to work with your healthcare provider to obtain the most appropriate treatment. In doing so, you will keep disability at bay for as long as possible.
No. In the majority of cases, MS does not affect life expectancy.
There are unusual variants of MS that can be very aggressive and potentially shorten life, but these are not the norm. MS tends to affect quality of life, not quantity of life; people with multiple sclerosis often live just as long as those without it, but the symptoms and disease progression can affect how well they live day-to-day. With appropriate treatment and management, these effects on quality of life can be minimized.
A diagnosis of MS is not a death sentence. Multiple sclerosis is not fatal, except in very rare circumstances.
During advanced stages of disease progression, it is possible to die from complications related to MS (such as infections or pneumonia). However, that is far from common. In fact, the leading causes of death in the MS community are the same as the general population. Someone with MS is more likely to die from heart disease, cancer, or stroke than from multiple sclerosis.
Multiple sclerosis is a challenge, but there are many things you can do to fight it.
A good MS treatment plan must address four key areas: disease management, relapse management, symptom management, and general health.
Although there currently is not a cure for MS, there are disease-modifying treatments (DMTs) that can decrease the number of attacks, slow the worsening of the disease, and decrease the number of lesions on the brain. Early treatment, beginning at the time of diagnosis, is essential to minimize the damage MS may cause.
Today, a wide variety of DMTs are available, with different dosing and delivery methods: injections, infusions, and oral medications. With more than a dozen treatments available for people with relapsing forms of MS, finding the most effective treatment may involve trial and error, as it can be difficult to predict individual response to a particular medication. Your healthcare provider will discuss the available options and help you weigh the potential benefits and risks of each.
No DMTs are currently approved by the U.S. Food and Drug Administration to treat progressive MS, although several new treatments are currently in clinical trials and one has been submitted to the FDA for review. Many healthcare providers recommend a DMT for individuals with progressive disease who are still experiencing relapses.
More detailed information on the currently available DMTs is available here
A MS relapse, often also called an exacerbation, is a sudden onset of new symptoms or a worsening of old symptoms that have previously been stable. To be considered a relapse, the new symptoms must last for at least 24 hours and be separated from a previous relapse by at least 30 days. Not every relapse is treated and, often, the symptoms will pass on their own.
New symptoms may be frightening, will vary from person to person, and can adversely affect your quality of life. With appropriate planning and symptom management, a lot can be done to alleviate fear, minimize negative effects, and maintain a good quality of life.
Good symptom management can include medical, rehabilitative, psychological, and lifestyle approaches to treatment. The approach will depend on the type of symptom, its severity, and several other factors, such as your physical ability and support system. Some symptoms might be treated with a combination of approaches. For example, treating chronic fatigue might involve taking a medication, learning energy conservation techniques through occupational therapy, and making changes in lifestyle to introduce healthier sleep habits.
MS Focus recommends that you discuss each new symptom with your healthcare team, even if you believe that you are able to manage it on your own. Some symptoms are best treated with early intervention in order to prevent worsening. Other symptoms may need to be monitored for changes over time.
The state of a person’s overall health can have a significant effect on their ability to maintain their quality of life with MS. For example:
When you have good general health, and a healthy daily routine, you're body will be more prepared to handle symptoms as they flare-up. For this reason, routine medical care, exercise, nutrition, and proper rest are highly important factors to consider in an MS treatment plan.
There is no specific dietary recommendation for MS. For someone without MS, certain aspects of how you eat have been shown to reduce the risk of MS. Specific diets have been shown to improve certain symptoms in those with MS.
Studies that examine patterns in health across specific populations demonstrate that a "Westernized" diet (high in fat, salt, sugar, and processed food, and low in vegetables) is associated with increased MS risk. Moreover, obesity is a risk factor for developing MS, possibly because it contributes to chronic inflammation. These facts, taken together, indicate that diet may be a factor in developing MS, but it remains to be seen whether diet can play a role in stopping the disease.
While no diet regimen has been shown to slow, stop, or reverse the damage caused by MS, specific diets have shown some benefit for symptom management in clinical trials.
Among those diets that have shown positive trial results, the most noted effect was a reduction in fatigue. Participants also improved their general health, including weight and blood lipid levels. Among these diets studied specifically for MS, there are some differences and similarities.
This overview of the available research strongly indicates that a diet high in vegetables, fruits, and whole grains -- and low in fat, sugar, and processed foods -- is a common-sense approach to diet for individuals with MS. In addition to reducing fatigue and weight, eating consistently well over a period of time may help improve other MS symptoms, such as bladder and bowel problems, and prevent other diet-related health conditions. It may also positively affect mental and emotional health, including memory and concentration.
Yes. Pregnancy is safe for both mother and child.
MS does not hinder a woman’s chance of becoming pregnant or of carrying a child to full term. In fact, pregnancy is typically associated with a remission of MS, especially in the second and third trimesters. However, the six months after the baby is born are associated with a slightly higher risk of a relapse. Overall, the effect of pregnancy on a woman's MS may be slightly protective.
Children with a parent with MS have a slightly increased chance of developing MS in their lifetime. They are, roughly, 2.5 percent more likely to develop MS. Many potentials parents will often weigh the increased risk when thinking about starting a family. MS Focus Senior Medical Adviser Ben Thrower, M.D. said, “While your child may have a 2.5 percent risk of developing MS, remember that means there is a 97.5 percent chance they will not.”
MS medications are another factor in the decision to start a family. Most MS medications should not be used during pregnancy on the basis of animal studies, and none have been studied specifically in pregnant women. If you are planning a family, speak to your doctor about the process and timing of stopping and restarting your medication.