Real people Real stories.

Montel Williams story

When the neurologist said those words -"You Have MS" it hit me like a brick.I thought the diagnosis was a death sentence. I learned that I had been having MS episodes off and on for more than 20 years, but like so many, I was in denial about my illness. I started The Montel Williams MS Foundation. Every dollar raised goes to research dedicated toward a cure for MS. Research shows that early diagnosis and treatment prevents the progression of MS.
The world needs to know the warning signs of MS and the treatment options available. The world needs to understand that many more people have MS than current data indicates. The world needs to mobilize against MS and knock it out for good.I believe to the depth of my soul that all of these goals can be achieved. It will take courage and commitment, but these are qualities we can help each other find in ourselves. I know we can build a future of hope and health, and together we're going to win. To read the full story of Montel's story you can visit The Montel Williams MS Foundation.

Bobby Welker's Story

Bob was diagnosed with Primary Progressive Multiple Sclerosis in January 2007. He had been having symptoms for five years before his diagnosis. He is a fighter and continues to live his life to the fullest. Since he was diagnosed he has participated in the Utah MS walk held every April. He walks the whole 5 KM with the help of his friends and family. The doctors told him that completely this race is like a marathon for him. He is an awesome example to everyone around him.

Clay Walker's MS Story

Clay Walker was the high school football star in Beaumont, Texas. Clay's diagnosis with relapsing-remitting multiple sclerosis (RRMS) came at a pivotal time in his life. In 1996, at the age of 26, he recently had finished his fourth album, his career in country music was exploding, and his oldest daughter had just been born. The last thing he expected was the tingling, numbness on his right side, and facial spasms that hit while he was on tour. After a battery of tests, he was diagnosed with RRMS. He worried how it would affect his career. In characteristic fashion, Clay prayed about it and then set his mind to doing everything he could to overcome the obstacles MS set before him. Clay has kept touring and recording steadily since he was diagnosed. He is well-known for his high-energy concerts and performance style. Knowing that others with MS have not been so lucky led him to the decision to form the Band Against MS Foundation, a not-for-profit organization dedicated to making information about living with MS available and providing funding for research. Being diagnosed with MS hasn't been easy," said Clay. "I choose to view it as a 'bump in the road' rather than a detour, because I have been blessed to still be able to do the things I love." You can visit Clay Walker's Band Against MS for more information.

Four Disease Courses Have Been Identified in MS

Relapsing-Remitting MS (RRMS)
RRMS is the most common form of the disease. It is characterized by clearly defined acute attacks with full recovery or with residual deficit upon recovery. Periods between disease relapses are characterized by a lack of disease progression. Approximately 85% of people with MS begin with a relapsing-remitting course.

Primary Progressive MS (PPMS)
PPMS is characterized by progression of disability from onset, without plateaus or remissions or with occasional plateaus and temporary minor improvements. A person with PPMS, by definition, does not experience acute attacks. Of people with MS are diagnosed, only 10% have PPMS. In addition, the diagnostic criteria for PPMS are less secure than those for RRMS so that often the diagnosis is only made long after the onset of neurological symptoms and at a time when the person is already living with significant disability.

Secondary-Progressive MS (SPMS)
SPMS begins with an initial relapsing-remitting disease course, followed by progression of disability that may include occasional relapses and minor remissions and plateaus. Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS

Progressive-Relapsing MS (PRMS)
PRMS, which is the least common disease course, shows progression of disability from onset but with clear acute relapses, with or without full recovery. Approximately 5% of people with MS appear to have PRMS at diagnosis. Not infrequently a patient may be initially diagnosed as having PPMS and then will experience an acute attack, thereby establishing the diagnosis of PRMS.

The Assessment of Disease Progression
Physicians evaluate disease progression in three ways:
Radiographically—by looking for new lesions, gadolinium-enhanced lesions, or an increased amount of disease on MRI
Electrophysiologically—by measuring changes in the sensory evoked potentials
Neurologically—by measuring changes in function on the neurologic examination
Functionally—by assessing the person’s physical and cognitive abilities

These graphs and information were found at the National Multiple Sclerosis Society website and The Multiple Sclerosois Association of America

Treatment

Treatment

There is currently no cure for multiple sclerosis, however there is treatment to modify the disease course, treat attacks, relapses, and flare ups, manage symptoms, improve function, and provide support. These treatments will help to improve the quality of life for people living with MS.

Medication

Disease modifying medications can help reduce the frequency and severity of attacks, reduce the accumulation of lesions on the brain and spinal cord, slow down disability. They are taken mostly for a long term period of time and are the best defense to slow down the course of MS. They come in the form of both pills and injections. There are six that are currently FDA approved; Avonex, Betaseron, Copaxone, Rebif, Tysabri, and Novantrone.

Rehabilitation

The goal of rehabilitation is to improve and maintain function. From the time of diagnosis onward, rehab specialists provide education and treatment designed to promote good health and general conditioning, reduce fatigue, and help you feel and function at your best—at home and at work. Types of Rehabilitation Therapies include physical therapy, occupational therapy therapy for speech and swallowing problems, cognitive rehabilitation, and vocational rehabilitation. For more information you can visit one of the many Multiple Sclerosis Rehabilitation centers.

Complementary and alternative medicine

Complementary and alternative medicine (CAM) includes a variety of interventions—from exercise and dietary supplements to stress management strategies, biofeedback, and acupuncture. These therapies—which come from many different disciplines and traditions—are generally considered to be outside the realm of conventional medicine. When used in combination with conventional medicine, they are referred to as “complementary;” when used instead of conventional medicine, they are referred to as “alternative.” In the United States today, approximately 75% of people with MS use one form or another of CAM, generally in combination with their prescribed MS treatments.

Programs and activities for Multiple Sclerosis Awareness

SWIM 2009 FOR MS

Volunteers can come out and participate in this fundraising activity. The funds that volunteers will raise will help to enrich the lives of those affected with Multiple Sclerosis. This activity is held not only to raise money but also to encourage those who have MS to participate in swimming. Swimming helps to stretch muscles and encourage a larger range of movement for those with MS. To learn more visit Multiple Sclerosis Association of America

Bike MS

100 rides. One destination. A world free of MS. This activity is held in 100 locations throughout the U.S. The funds earned from this activity will be used towards Multiple Sclerosis research. If you visit the National Multiple Sclerosis Society you can see a video about Bike MS.

Walk MS

Six hundred walks. One destination. A world free of MS. You'll move. You'll be moved. Join Walk MS in your community. Joining the movement with hundreds of thousands of people across the country is an experience like no other. We walk together to make a powerful statement, and to keep moving toward a cure.

Other Programs and Activities

Dinner of Champions

The MS Dinner of Champions is the premier gala event of the National Multiple Sclerosis Society honoring many of America’s most prestigious corporate leaders and corporations. Howard Cosell and Frank Gifford founded the MS Dinner of Champions in 1972 and today this fundraiser is one of the country’s most celebrated and popular testimonial events held in select cities throughout the country

Women on the Move Luncheon

The MS Women on the Move Luncheon is an education and fundraising luncheon that creates an inspiring, motivational and empowering environment. The event creates a social environment for likeminded people to gather, learn about multiple sclerosis, and raise funds to help end MS.

National Conference for MS

To move forward, we must come together. That's what the National MS Society's National Conference is all about. Each autumn, the MS community — health professionals, fundraisers, volunteers, and most importantly, people living with MS — gather to enjoy each other's company and inspire each other to take ever-greater strides toward a world free of MS.

MS Awareness Week

This week is held to really advocate awareness of MS. During this week you can participate in a walk, bike riding, advocacy, volunteer, and donate.

For more information on all of these programs and activities can be found at the National Multiple Sclerosis Society website.

FAQ about Multiple Sclerosis

FAQS about Multiple Sclerosis

1. Who gets MS?
Anyone may develop MS. MS occurs in most ethnic groups, including African-Americans, Asians and Hispanics/Latinos, but is more common in Caucasians of northern European ancestry.

2. How many people have MS?
Approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the numbers can only be estimated.

3. Is it safe to get pregnant?
Many of those diagnosed with MS are young women with plans of having children at some point in their future. The good news is that MS does not affect fertility, and pregnancies progress “normally” (that is, having the same benefits and risks as someone without MS).
For most women with MS, MS symptoms often stabilize or improve during pregnancy. Unfortunately, 20-to-40 percent of women have a relapse following delivery, so new mothers will need to plan for more rest and assistance during the first few months. Disease progression and long-term risk of additional relapses are not affected by pregnancy.
Some of the medications taken for MS can increase the risk of miscarriage and are transmitted in breast milk. Women considering pregnancy should discuss their medications with their neurologist in advance. Some medications may need to be discontinued a few months before attempting to become pregnant.
Having a child is an important decision for any person or couple. With MS, parents need to consider that fatigue and other symptoms may well affect the amount of activity the mother may be able to perform with the child or children in their younger years. Assistance from others — such as family and friends — may be needed at certain times. Before making the commitment, individuals and couples may want to discuss the different issues with their healthcare provider.

4. Is MS fatal?
In rare cases MS is so malignantly progressive it is terminal, but most people with MS have a normal or near-normal life expectancy. Severe MS can shorten life.

5. Does MS always cause paralysis?
No. Moreover, the majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

6. Is MS contagious or inherited?
No. MS is not contagious and is not directly inherited. Studies do indicate that genetic factors may make certain individuals susceptible to the disease.

7. Can MS be cured?
Not yet. There are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging.

8. What medications and treatments are available?
The National Multiple Sclerosis Society recommends that a person consider treatment with one of the FDA-approved "disease-modifying" drugs as soon as possible following a definite diagnosis of MS with active or relapsing disease. These drugs help to lessen the frequency and severity of MS attacks, reduce the accumulation of lesions (areas of damage) in the brain, and may slow the progression of disability.
Many therapies for MS symptoms such as spasticity, pain, bladder problems, fatigue, sexual dysfunction, weakness, and cognitive problems.

9. Why is MS so difficult to diagnose?
In early MS, symptoms that might indicate any number of possible disorders come and go. Some people have symptoms that are very difficult for physicians to interpret, and these people must "wait and see." While no single laboratory test is yet available to prove or rule out MS, magnetic resonance imaging (MRI) is a great help in reaching a definitive diagnosis.

10. Where is MS?
MS is a global disease
• The pattern of geographic variation in the prevalence of MS is complex and nonrandom.
o High-risk areas (> 30/100,000) include northern and central Europe (except
northern Scandinavia), Italy, the northern United States, Canada, south eastern
Australia, parts of the former Soviet Union, and New Zealand.
o Medium-risk areas (5–29/100,000), include southern Europe (excluding Italy), the
southern United States, northern Australia, northern Scandinavia, other parts of
the former Soviet Union, South Africa (white population only), and possibly
Central America.

These FAQ's are from The Multiple Sclerosis Association of America and The National Multiple Sclerosis Society.

Introduction to Multiple Sclerosis

Hey! Welcome to my blog! I hope through this blog I can inform people about Multiple Sclerosis. I have been very passionate about this topic since by brother Bobby was diagnosed almost two and half years ago. My family and I really did not know much about this disease before Bobby's diagnosis, so I am hoping that this blog will provide more information for those who do not know much about MS.

The Multiple Sclerosis Association of America defines Multiple Sclerosis as a chronic, an unpredictable and often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. It is also considered to be an autoimmune disease. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur. The damage appears in multiple places in the CNS.

According to National Multiple Sclerosis Society the most Common Symptoms of Multiple Sclerosis are fatigue, numbness in the face, body, or extremeties, walking, balance, and coordination difficulties, bladder dysfunction, bowel dysfunction, vision problems, sexual dysfunction, pain. cognitive function, depression, and spasticity. Some less common symptoms include speech disorders, swallowing problems, headache, hearing loss, seizures, tremor, respiration /breathing problems, and itching.

Every hour in the United States, someone is newly diagnosed with MS. Most people with MS are diagnosed between the ages of 20 and 50. Twice as many women as men have MS. It occurs more commonly among people with northern European ancestry, but people of African, Asian, and Hispanic backgrounds are not immune. It is believed that there are currently about 250,000 to 350,000 people in the United States who have been diagnosed with multiple sclerosis. This estimate suggests that approximately 200 new cases are diagnosed each week.