Multiple Sclerosis

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>> What is Multiple Sclerosis?

Multiple sclerosis (MS) is the most common neurological disorder diagnosed in young adults. Its causes are not yet fully understood and researchers continue to search for answers. MS is not contagious and does not shorten the life expectancy of those who are diagnosed with the disease. Although the disease may not be cured or prevented at this time, treatments are available to reduce severity and delay progression.

MS is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves and spinal cord. This disorder damages the protective insulation (known as "myelin") surrounding the nerves (known as "axons"), and may also damage theses nerves within the CNS. As a result, nerve impulses carrying messages from the brain and spinal cord may short circuit, causing reduced or lost bodily function.

The effects of MS differ with each individual. Some people experience symptoms for a short period of time and afterward may remain symptom-free for periods or months or years. While others may experience a more steady progression of the disease.

Most researchers believe MS is an "autoimmune disease" -- one in which white blood cells, meant to fight infection or disease, are misguided to target and attack the body's own cells. This attack causes inflammation in the CNS, which may damage the myelin and ultimately injure the nerves.

Areas of inflammation are known as “lesions” or “plaques.” The changes in size, number, and location of these lesions may determine the type and severity of symptoms. Frequently, however, MS may be “clinically silent,” showing no increase in symptoms while continuing to show signs of disease activity within the CNS.

Additionally, areas of thick scar tissue may eventually form along the areas of damaged myelin. The term “multiple sclerosis” originates from the discovery of these hardened plaques. Multiple refers to many; sclerosis refers to scars.

Researchers have studied a variety of possible causes for MS, and a combination of factors appears to be involved. A popular theory looks at commonly known slow-acting viruses (one that could remain dormant for many years), such as measles, herpes, human T-cell lymphoma, and Epstein-Barr. After being exposed to one of these viruses, some researchers theorize that MS may develop in genetically susceptible people. Research to identify the specific genes involved in MS is also ongoing.

Some scientists are looking for a connection between MS and nutritional factors, including fat intake, as well as deficiencies in fish oil and vitamin D. In addition to food and supplements, vitamin D is also derived from sunlight, which may be involved in the development of MS. As noted in the following section, populations living closer to the equator (and exposed to more sunlight) experience a lower incidence of MS.


>> Who Gets MS?

Approximately 400,000 individuals have been diagnosed with MS in the United States and as many as two and a half million worldwide, with an estimated 10,000 new cases diagnosed in the United States annually. Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50.

The distribution of this disease is not totally random. On average, women are three times as likely than men to develop MS. Additionally, the occurrence of this disorder is positively correlated with latitude. People living beyond the 40-degree mark north or south of the equator are far more likely to develop MS than those living in the warmer climates near the equator. This is especially true for people in North America, Europe, and southern Australia, while Asia continues to have a low incidence of MS. More prevalent among those of northern European or Scandinavian ancestry, Caucasians are far more likely than those of African heritage to develop this disease.

While MS is not contagious or hereditary, MS susceptibility is increased if a family member has MS. The average risk of developing MS in the United States is one in 1,000, or one tenth of one percent. For first-degree relatives (such as a child or sibling), the risk increases to three or four percent. This is not true for adopted children or half siblings (who do not share the same parent who has MS), whose risk is the same as unrelated individuals. In instances where one identical twin has been diagnosed with MS, the other twin has a 31 percent risk of developing the disease. The risk for twins who are not identical is five percent - similar to that of other siblings.

Another factor linked to MS is cigarette smoking. Women who smoke are 1.6 times more likely to develop MS than women who are non-smokers. Additionally, individuals with MS who smoke appear to be at a much greater risk of experiencing a quicker progression of their disease.


>> Information for the Newly Diagnosed

What Does "Newly Diagnosed" Mean?

For many, being newly diagnosed finally gives a name to having some unexplained symptoms. Often before a diagnosis of multiple sclerosis (MS), a person might experience various symptoms, such as visual problems, numbness, or weakness, for example. Not knowing what is wrong and what might happen next is both worrisome and frightening. Once someone has been newly diagnosed with MS, he or she may actually feel a sense of relief in knowing the reason behind the different symptoms. From here, learning more about the disorder and its treatments will be of great help toward developing a positive plan for the future.

If you are newly diagnosed, you may have never heard of the term "MS" before, and some people even confuse the name with other disorders. Now, however, the term is linked to you personally. You may feel very alone, but you are not. The fact is, an estimated 400,000 people in the United States have MS, not to mention an estimated one to two-and-a-half million people in the world. And these estimates could be low, as a number of cases may not be reported or have not yet been diagnosed. Many individuals with MS continue to work and be active in the community -- some you may even know, but you are unaware of their diagnosis.

While finally getting a name for your symptoms may give you a sense of relief, you may also still feel frightened and out of control. After all, MS can be quite unpredictable with its hallmark flare-ups and remissions. You may feel you have lost your compass, your perspective, and everything experienced now is under the cloud of this new label of an "MS patient."

But while you may have been diagnosed with MS, this does not change who you are. You still look the same, have the same family and friends, and you have the same thoughts and dreams. When MS enters the picture, it usually requires some adjusments, but most people can still enjoy a full and productive life.

Here are some good things to know about MS

* For most people, it does not shorten their life expectancy, so the majority of individuals who are diagnosed with MS may plan on living into their golden years -- provided they are fortunate in general and take good care of themselves.
* Since the early 1990s, many long-term and symptom-management treatments and therapies have become available -- which makes living with MS more controllable and comfortable.
* Research is ongoing around the world with many new, promising treatments on the way.
* MS is not contagious.
* MSAA is available to provide a number of vital services, such as valuable and understanding phone consultation, informative and motivational publications and website, an extensive database of specialized MS services, MRI assistance, and equipment programs.

Things you can do

Some people who are newly diagnosed may experience confusion or even a sense of anger toward medical professionals and others, who may be providing you with too much information too quickly... or conversely, too little information. You will need time to adjust to the new diagnosis, so take things in at your own pace. You may want to know all you can right away, and if so, consulting reliable resources will provide you with accurate information on everything you need to know. On the other hand, you may want to learn about the disease a little at a time, and that is okay too. The important things are that you have confidence in the neurologist or physician you have selected for your care, and that you follow his or her treatment recommendations.

When you visit your neurologist it’s helpful to prepare yourself by writing a series of questions and concerns in advance. You may even decide to interview the neurologist before you make a definite selection. Asking questions like, "What happens if I have new symptoms, or if questions arise between visits?" In addition, you should be keeping your own personal health journal, as you are the best reporter of your symptoms to the neurologist.

Don't be surprised if you do not understand what is initially happening to your body, or if the unpredictability of symptoms cause you to feel constant anxiety. These are not unusual for someone who is newly diagnosed. But as you learn more about MS and find a treatment plan that works for you, these feelings will eventually subside. You may find that speaking with a professional is beneficial, and finding someone who specializes in helping individuals with long-term conditions such as MS is a good idea. Participating in a support group for newly diagnosed individuals can also be therapeutic.

Including your family and friends

Most family and friends will try to be supportive, but at times they might not know what to do. They may need reassurance from you, to find out how you are coping with your new diagnosis and any symptoms you may be experiencing. A few friends or family members may even look at you differently, because they don't understand how difficult this may be for you. This brings up the fact that many MS symptoms are "invisible," so while you might be experiencing numbness or extreme fatigue, you will still look the same to those around you.

Having open discussions with family members and friends can greatly help with their understanding of MS and your feelings. Explain to your family that you are still the same person that you were before the diagnosis. You don’t expect them to have all of the answers. Share with them that you may have good days and bad days -- and that you welcome their support through this process. If they can be present for you and simply listen, the experience will be life changing for everyone involved.

If you have children, what should you tell them?

Being honest with your children is the best plan. They know when you are secretive or elusive and that becomes more frightening, coupled with the keen ability of a child’s imagination. Remember that a child’s attention span is short. Find out what the child already knows and then share pieces of basic information as tolerated during the course of several days or weeks.

Explain to the child that you are still the same person. Families are always evolving and changing, just like life, but family members can support one another and overcome obstacles. By sharing your experiences in coping with MS, you are teaching your child about the journey of life. Be sure to emphasize support systems like extended family, teachers, and friends who really care. Children learn that families can work together to solve problems and move beyond a crisis.

MSAA offers a children’s book, Mommy’s Story, addressing this subject.

Developing a plan is key

Developing a comprehensive plan of care, one that is not limited to multiple sclerosis, is vitally important. This should be done together between you and your healthcare providers. Such a plan includes management of overall health issues that should not be neglected. Most importantly, patients need to be very careful not to blame every symptom on multiple sclerosis. Be sure that your primary care physician and your neurologist are advised of any symptoms you are experiencing, all treatments you are receiving, and any other conditions you may have.

Components of a comprehensive care plan may include:

* An initial long-term treatment therapy (such as Avonex, Betaseron, Copaxone, or Rebif) for early treatment of MS
* Symptom management; MSAA offers an informative video series on MS Symptom Management
* Physical therapy and exercise
* Nutritional counseling
* Stress management
* Psychosocial issues and counseling options

Employment concerns - Things to consider

An employee with a diagnosis of multiple sclerosis should consider whether or not to disclose their diagnosis to the employer. In disclosing your diagnosis, it may be easier for you to receive the accommodation necessary to continue to be effective in your position. However, there may be some risk in disclosure. Employers sometimes, due to their lack of knowledge about multiple sclerosis, may view the diagnosis negatively, and disclosure may in fact place the employee’s job at risk. The good news is that there are a variety of resources to assist employees with these complex decisions.

For more information on employment please read the articles from MSAA’s quarterly magazine The Motivator.The Spring 2005 Issue features a story on employment strategies and the Winter/Spring 2007 issue features a Health and Wellness column on this subject.

MSAA ENCOURAGES YOU AND YOUR FAMILY TO CONTACT OUR CLIENT SERVICE HELPLINE FOR MORE INFORMATION. TO REACH MSAA'S HELPLINE, PLEASE CALL (800) 532-7667.


>> What are the Symptoms of MS?

Commonly seen symptoms include:

* fatigue
* visual disorders
* numbness
* dizziness/vertigo
* bladder and bowel dysfunction
* weakness
* tremor
* impaired mobility
* sexual dysfunction
* slurred speech
* spasticity (leg stiffness)
* swallowing disorders
* chronic aching pain
* depression
* mild cognitive and memory difficulties

While MS has the potential to cause several different symptoms, the specific symptoms each person experiences vary greatly. When experiencing one or more of these symptoms, an individual should consult his or her physician. Medications are available to treat manyl MS symptoms. These may include over-the-counter drugs as well as prescribed medications. Diet and exercise may also be helpful with managing certain symptoms. All treatments or changes in diet or exercise should only be done under the guidance of a qualified physician.

MS symptoms are often compounded by extreme fatigue, which may be worse in the afternoon, sometimes relating to a rise in body temperature. Some symptoms may be temporarily increased by heat intolerance - a classic MS tendency, where a rise in temperature (internally or externally) causes a person to feel much worse. Keeping cool through air-conditioning or various cooling devices (such as those offered by MSAA's Cooling Equipment Distribution Program), may be helpful for people with heat-sensitive MS.

When recovering from a symptom flare-up or learning to cope with a change in mobility, rehabilitation through physical therapy and occupational therapy can be of great value. Speech therapy, therapeutic exercise, and certain medical devices may also be useful in dealing with the symptoms of MS. Some of those who have a physically demanding or highly stressful job may choose to make a career change, in which case vocational training is helpful.

When a family member is diagnosed with MS, participating in some type of counseling program is often of benefit to everyone involved. Individuals may be affected in different ways, both physically and emotionally. Seeking professional assistance helps to ensure that MS does not disrupt one's family and happiness.

For more information on symptom management and handling the challenges of MS, MSAA offers several helpful publications, as well as an extensive collection of MS-related books from MSAA's Lending Library. Additionally, MSAA's staff of qualified Helpline consultants is available to discuss a caller's needs and questions personally. To contact MSAA, interested individuals may call (800) 532-7667.


>> Common Types of MS

On average, 80 percent of people with MS begin with the relapsing-remitting form of MS (RRMS). What distinguishes this type of MS from other types are the temporary symptom flare-ups or "exacerbations" (also referred to as relapses, attacks, or bouts), which typically last for one to three months. These are followed by a complete or partial recovery ("remission").

Between relapses, many people may go into remission for a year or more. During this time, they may remain symptom-free, or only experience mild changes with symptoms that did not fully remit following the exacerbation. While symptoms may not appear or worsen between MS attacks, changes do continue within the CNS. New treatments are now available to help slow the damage caused by MS. (These treatments are disucssed in the following section.)

Initially, people with RRMS often experience:

* sensory disturbances (such as numbness or tingling)
* optic neuritis (inflammation of the optic nerve causing visual changes or loss; usually occurring in one eye)
* diplopia (double vision; objects may also appear to jump as a result of the eyes not properly coordinating together)

Fortunately, visual changes are often temporary. Other initial symptoms with RRMS may include limb weakness, clumsiness, fatigue, cognitive changes, bladder and bowel problems, sexual difficulties, and Lhermitte's sign. The latter is a tingling sensation that radiates down the spine and into the limbs when the neck is flexed.

If untreated, more than 90 percent of individuals with RRMS may eventually enter a second phase of RRMS, known as secondary-progressive MS (SPMS), within 25 years. This phase is reached when the person experiences a progressive worsening of symptoms. SPMS may occur with or without superimposed relapses.

While the majority of individuals with MS (80 percent) are diagnosed with RRMS, most of the other 20 percent fall under the heading of primary-progressive MS (PPMS). This form of MS presents a gradual but steady accumulation of neurological problems from the onset, without the presence of relapses and remissions. Unlike RRMS, where women are three times as likely to be diagnosed than men, PPMS is equally divided between the genders.

Other types of MS exist, but these are not as common. These include benign (little or no change after 20 years), progressive-relapsing MS (PRMS) (progressive course from the onset with acute relapses), and malignant or fulminant MS (rapidly progressive disease course).

Types of Multiple Sclerosis

Relapsing-remitting MS (RRMS)
Symptom flare-ups followed by recovery; stable between attacks

Secondary-progressive MS (SPMS)
Second phase of RRMS; progressive worsening of symptoms with or without superimposed relapses; treatments may delay this phase

Primary-progressive MS (PPMS)
Gradual but stead accumulation of neurological problems from onset

Benign
Few attacks and little or no disability after 20 years

Progressive-relapsing MS (PRMS)
Progressive course from the onset, sometimes combined with occasional acute symptom flare-ups

Malignant or fulminant MS
Rapidly progressive disease course


>> Treatments

Approved Long-Term Treatments

The first three long-term MS treatments to be approved were dubbed the "A-B-C" drugs because of their brand names: Avonex®, Betaseron®, and Copaxone®. These are interferon beta-1a, interferon beta-1b, and glatiramer acetate, respectively. All were approved by the Food and Drug Administration (FDA) for treating RRMS. These drugs have been approved by the Food and Drug Administration (FDA) for treating either RRMS or all relapsing forms of MS. Some of the drugs have also been approved for “clinically isolated syndrome” (CIS), which refers to the initial symptom a patient reports prior to a diagnosis of MS. These drugs have been used for several years and research shows that people are doing well on these medications for long periods of time (some for more then 20).

The fourth drug to be approved by the FDA was Novantrone® (mitoxantrone), and this was the first drug indicated for RRMS, SPMS and worsening RRMS. News then arrived of a fifth FDA-approved drug Rebif® (interferon beta-1a) for relapsing types of MS. This is the same drug as Avonex, but is injected differently and in more frequent and higher doses.The sixth drug now available for MS is Tysabri® (natalizumab), which is approved for relapsing forms of MS.

Several large clinical trials have been conducted to study each of these drugs separately for their effects on MS. Although differences exist in study design and specific findings, trials generally showed these common results:

* Reduced the number of relapses
* Reduced the severity of relapses
* Reduced the development of new areas of inflammation as seen on MRI
* Showed some evidence of delaying short-term disease progression

Each of the approved treatments has side effects which are usually manageable. At this time Novantrone is the only drug that has a set limit of doses, which is necessary to avoid cardiotoxicity (heart damage). After its original approval, Tysabri was temporarily suspended after two individuals (taking Tysabri in combination with Avonex) developed progressive multifocal leukoencephalopathy (PML), which is an often-fatal viral infection of the brain. Since that time, Tysabri has been re-approved and patients are closely monitored through the “TOUCH Prescribing Program.” The other drugs appear safe provided the person taking the drug is not experiencing any adverse effects and blood tests continue to be normal.

While no damage to the reproductive system or the fetus has been observed, these drugs are not recommended if a woman is pregnant or considering pregnancy during her treatment period. Male patients considering certain long-term treatments should discuss options for family planning with their doctor.

Other treatments are sometimes used to try to slow MS disease progression when other therapies have been ineffective. Such treatments are approved by the FDA for other illnesses, but not specifically for the treatment of MS. These include intravenous immunoglobulin (IVIg) therapy, methotrexate, azathioprine (Imuran®), and cyclophosphamide (Cytoxan®).

Additional information about interferons: Some individuals develop neutralizing antibodies (NABs) to the interferons (Avonex, Betaseron, and Rebif), but their impact on the effectiveness of these medications has not been established. Many continue to do well on these drugs despite the presence of NABs. Others may have sub-optimal results even without NABs present.

The MS Council and the American Academy of Neurology have concluded that the higher-dosed interferons are likely to be more effective than lower-dosed interferons. Several factors, however, must be considered when selecting one of these drugs, and this decision must be made on an individual basis under the guidance of a qualified physician.

Treating Exacerbations with Steroids

Most people with MS experience exacerbations (or MS attacks) which often last from one to three months. Acute physical symptoms and neurological signs must be present for at least 24-to- 48 hours, without any signs of infection or fever, before the treating physician may consider it to be a true relapse.

A pseudoexacerbation is a temporary worsening of symptoms, without actual myelin inflammation or damage, which is brought on by external influences — such as infection, exhaustion, heat, depression, or stress. Checking for a fever is important, since even a minor infection can cause old symptoms to reappear. Urinary tract infection (UTI) is the most common illness to cause a pseudoexacerbation. People with "heat-sensitive" MS should avoid hot tubs, saunas, or other situations that can raise the body's temperature. These too can cause a temporary increase in symptoms.

Exacerbations are usually treated with a high-dose, short-term course of powerful steroids (corticosteroids). The goals are to (1) reduce the severity and duration of the relapse by decreasing inflammation, and (2) potentially minimize any permanent damage resulting from the attack. Steroid treatments are often given by IV injection (intravenously), which injects the drug directly into the bloodstream for quick action. In the past, this could only be done in a hospital setting, but now this treatment may be performed in the comfort of one's home.

Long-term use of steroids is not generally recommended. They can cause many side effects when given over a long period of time and may have no effect on the long-term progression of MS.

(see web site for table on approved treatments)


>> Multiple Sclerosis Medications

Many effective medications are available for the treatment of multiple sclerosis (MS). These types of drugs may be prescribed for three different categories of MS treatment: disease-modifying immunotherapy, exacerbation management, and symptom management.

The first type of treatment is disease-modifying immunotherapy, which uses one of several approved drug therapies to show MS activity and progression. The second area of treatment is exacerbation management, which helps to control this sudden flare-up of symptoms, often lasting for one to three months. The third and equally important area of drug treatment for MS is symptom management.

Most of these medications are available by prescription only, but even with over-the-counter medications, anyone considering making a change to his or her present regimen should consult a physician. Some of these medications may cause side effects, and these can be managed by the medical professional through adjusting dosage, switching drugs, or adding other medications.

The Multiple Sclerosis Association of America (MSAA) does not recommend or endorse any particular product, treatment, or medication. All information given is to increase awareness and should not be used to determine one's treatment plan.

Listing of Multiple Sclerosis Medications:
See: http://www.msassociation.org/about_multiple_sclerosis/medications/types/



>> Looking Ahead

This is a promising time for individuals who have been diagnosed with MS. Since the early 1990s, treatment options have gone from zero to six and many more therapeutic agents are on their way. Among others, MS drugs under investigation include cancer-fighting drugs, antiviral medications, vaccines, bone marrow transplants, pregnancy-related hormones, cholesterol-fighting drugs, stem cells, and agents such as growth factors that may repair myelin. Regeneration, neuroprotection, and gene therapy are also being explored.

For MS terms and general information please visit the "Health and Wellness" article from the summer 2007 issue of The Motivator. http://www.msassociation.org/publications/summer07/health.asp

For more information about approved and experimental treatments for MS please go visit the "MS Research Update" from the summer 2007 issue of The Motivator. http://www.msassociation.org/publications/summer07/cover.story.asp


>> Sources of Information

Sources for more information include:

Consortium of Multiple Sclerosis Centers (CMSC)
CMSC/NARCOMS patient
registry: (800) 253-7884
www.mscare.org
www.narcoms.org

Multiple Sclerosis Foundation
(888) 673-6287
www.msfacts.org

National Multiple Sclerosis Society
(800) 344-4867
www.nmss.org

(Avonex) MS ActiveSource
(800) 456-2255
www.avonex.com

(Betaseron) BETAPLUS
(800) 788-1467
www.betaseron.com

(Copaxone) Shared Solutions
(800) 887-8100
www.sharedsolutions.com

(Novantrone) MS LifeLines
(877) 447-3243
www.novantrone.com

(Rebif) MS LifeLines
(877) 447-3243
www.MSLifeLines.com

Tysabri
(800) 456-2255
www.tysabri.com