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Multiple Sclerosis (MS)DISABILITY CATEGORY: Orthopedic Impairment—Multiple Sclerosis (MS) TYPES: Relapsing Remitting MS, Secondary Progressive MS, Benign MS, Progressive Relapsing, and Primary Progressive MS DEFINITION(S): Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines orthopedic impairment as follows: “…a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by congenital anomaly (e.g., clubfoot, absence of some member, etc.), impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).” [34 Code of Federal Regulations §300.7(c) (8)] Other Definitions: MS is thought to be an autoimmune disease that affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses. In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes the nerve fiber itself is damaged or broken. Myelin not only protects nerve fibers, but makes their job possible. When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of MS. (Source: National MS Society) FACTS AND STATS: In the last decades of the 19th century, the leading physicians of the world came to understand that MS was a specific disease. MS was recognized in England by Dr. William Moxon in 1873, and in the United States by Dr. Edward Seguin in 1878. By the end of the century, much of what can be learned about MS from careful observation was known: that the disease is more common in women than men, that it is not directly inherited, and that it can produce many different neurological symptoms.
(Source: National MS Society, CDC’s National Center for Health Statistics) CAUSES: While the exact cause of MS is unknown, most researchers believe that the damage to myelin results from an abnormal response by the body’s immune system. Normally, the immune system defends the body against foreign invaders such as viruses or bacteria. In autoimmune diseases, the body attacks its own tissue. It is believed that MS is an autoimmune disease. In the case of MS, myelin is attacked. Scientists do not yet know what triggers the immune system to do this. Most agree that several factors are involved, including:
People living in the northern latitudes have an increased risk over those living in the southern hemisphere. This suggests an environmental trigger. People who change geographic locations prior to the age of 15 acquire the risk of the region they move to. Although it is not directly inherited, there is some genetic predisposition; there is a one- to three-percent risk of developing MS if a parent or sibling has the disease. Identical twins of a person who has MS have a 25-percent chance of getting the disease. The theory is that there is a genetic predisposition that may be triggered by environmental influences, although there is still no clear explanation. It is thought that there may be a virus that ultimately acts to trigger the inflammatory or immune response that results in myelin destruction. The main concept is that the immune system recognizes a part of the virus that is similar to that of myelin. Although a number of viruses have been implicated, none have been proven with certainty to be the triggering cause of MS. (Source: National MS Society, MSNet) PREVENTION: Generally, there is no way to prevent multiple sclerosis (MS) or its attacks. For people with relapsing-remitting MS, treatment with interferon beta or glatiramer acetate may reduce the frequency of relapses, and interferon beta may delay disability. Interferon beta-1b (Betaseron) or mitoxantrone (Novantrone) may delay the progression of the disease for some people with secondary progressive MS. Around half of people with relapsing-remitting MS will progress to secondary progressive MS within 10 years. (Source: WebMD) CHARACTERISTICS: Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person. For example, one person may experience abnormal fatigue, while another might have severe vision problems. A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness, and bladder problems. While some symptoms will come and go over the course of the disease, others may be more lasting. Relapsing Remitting MS Most people are diagnosed with relapsing remitting MS. This is when you have relapses (a flare-up of symptoms), followed by remissions (periods of recovery). Relapses are unpredictable. They can last for days, weeks or months and vary from mild to severe. During a relapse you will either experience new symptoms, or a recurrence or worsening of previous symptoms. During remission, symptoms can disappear completely, though sometimes people make only a partial recovery. Symptoms might not always be due to a new relapse. For example, exercise or hot weather can sometimes raise body temperature and make symptoms temporarily worse. Any changed or new symptoms must last for at least 24 hours to be described as a relapse. Frequency: Most common form of MS at time of initial diagnosis. Approximately 85%. Secondary Progressive MS Most people who have relapsing remitting MS later develop a form known as secondary progressive MS. This type of MS is identified when your condition becomes steadily worse, and your disability progresses, for a period of six months or more, whether you continue to have relapses or not. Frequency: 50% of people with relapsing-remitting MS developed this form of the disease within 10 years of their initial diagnosis, before introduction of the “disease-modifying” drugs. Long-term data are not yet available to demonstrate if this is significantly delayed by treatment. Benign MS If you have a small number of relapses followed by a complete recovery, you may be described as having benign MS. It is only possible to make a diagnosis of benign MS once you have experienced little or no disability for a period of 10 to 15 years. However, a diagnosis of benign MS does not guarantee that you will be free of problems; a relapse may occasionally occur after many years in which your MS has been inactive. Primary Progressive MS With primary progressive MS, symptoms steadily worsen, resulting in a continued progression in disability. You will not have distinct relapses and remissions. Frequency: Relatively rare. Approximately 10%. Progressive Relapsing MS People with this type of MS experience a steadily worsening disease from the onset but also have clear acute relapses (attacks or exacerbations), with or without recovery. In contrast to relapsing-remitting MS, the periods between relapses are characterized by continuing disease progression. Frequency: Relatively rare. Approximately 5%. (Source: Multiple Sclerosis Society of the UK, National MS Society) MEDICAL TREATMENT: Patients with MS have multiple needs, and the neurologist should be receptive and cooperative and try to allay fears, facilitate access to rehabilitation and orthotic equipment and home evaluations, and solve transportation issues. Bone densitometry studies are indicated for patients with MS who have received long-term corticosteroid treatment or are at higher osteoporosis risk from menopause or chronic immobility. Patients with more advanced forms of the disease who have lost all family support, are separated from their spouses, require constant psychiatric and nursing assistance, and are unable to walk are not rare. These patients create a challenge for the physician who is not trained in handling these demanding (administrative or ancillary) aspects of medical care. There is no known definitive cure for multiple sclerosis. However, several types of therapy have proven to be helpful. Different therapies are used for patients experiencing acute attacks, for patients who have the relapsing-remitting subtype, for patients who have the progressive subtypes, for patients without a diagnosis of MS who have a demyelinating event, and for managing the various consequences of MS attacks. Treatment is aimed at returning function after an attack, preventing new attacks, and preventing disability. Prevent relapses or disease progression by using the “ABCR” immunomodulatory drugs. These medications have been approved by the US FDA and are currently used in the United States as first-line therapies for MS. As a rule of thumb, the ABCR medications tend to decrease the rate of MS relapses by approximately one third, with the highest efficacy demonstrated in clinical trials for the high-dose, high-frequency interferons. You may find that complementary and alternative therapies help you feel better. Acupuncture, yoga, meditation, aromatherapy, herbal preparations and homeopathy are just some of the treatments that are widely available. The NICE Guidelines suggests that there is some evidence that reflexology, massage, yoga, t'ai chi, magnetic field therapy, neural therapy, the combination of complementary therapies (known as multi-modal therapy) and taking fish oil supplements may be helpful for people with MS in terms of their general sense of well-being. However, this Guideline also notes that the evidence available for these therapies is insufficient to give any firm recommendations. (Source: WebMD, Multiple Sclerosis Society of the UK) PROGNOSIS: The future course of the disease (or prognosis) for people with multiple sclerosis depends on the subtype of the disease, the individual's sex and race, their age, their initial symptoms, and the degree of disability they experience. The life expectancy of people with MS is now nearly the same as that of unaffected people. This is mainly due to improved methods of limiting disability, such as physical therapy and speech therapy, and more successful treatment of common complications of disability, such as pneumonia and urinary tract infections. Individuals with progressive subtypes of MS, particularly the primary progressive subtype, have a more rapid decline in function. In the primary progressive subtype, supportive equipment (such as a wheelchair or standing frame) is often needed after six to seven years. However, when the initial disease course is the relapsing-remitting subtype, the average time until such equipment is needed is twenty years. This means that many individuals with MS will never need a wheelchair. The earlier in life MS occurs, the slower disability progresses. Individuals who are older than fifty when diagnosed are more likely to experience a chronic progressive course, with more rapid progression of disability. Those diagnosed before age 35 have the best prognosis. Females generally have a better prognosis than males. Although black individuals tend to develop MS less frequently, they are often older at the time of onset and may have a worse prognosis. Initial MS symptoms of visual loss or sensory problems, such as numbness or tingling, are markers for a relatively good prognosis, whereas difficulty walking and weakness are markers for a relatively poor prognosis. Better outcomes are also associated with the presence of only a single symptom at onset, the rapid development of initial symptoms, and the rapid regression of initial symptoms. The degree of disability varies among individuals with MS. In general, one of three individuals will still be able to work after 15–20 years. Fifteen percent of people diagnosed with MS never have a second relapse, and these people have minimal or no disability after ten years. The degree of disability after five years correlates well with the degree of disability after fifteen years. This means that two-thirds of people with MS with low disability after five years will not get much worse during the next ten years. It should be noted that most of these outcomes were observed before the use of medications such as interferon, which can delay disease progression for several years. MS causes considerable disability in the working age group. People with MS usually die of complications rather than of MS itself, including recurrent infections (especially in bedridden patients). (Source: WebMD, PubMed.gov) EDUCATIONAL IMPLICATIONS: Multiple sclerosis can sometimes lead to difficulties with concentration, memory, emotional expression and self-control. It is often hard to tell which emotional or behavioral symptoms are directly caused by MS and which are a response to loss, or to difficulties in coming to terms with the disease and its implications. Symptoms of depression, for instance, can be the result of a variety of physical, psychological and social factors. Treatment must take account of all these aspects, and include psychological assessment, cognitive rehabilitation, counseling and family therapy. Tips for Teachers:
(Source: MS Resource Center)
ORGANIZATIONS: National Multiple Sclerosis Society The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS. Founded in 1946, the National Multiple Sclerosis Society supports more MS research, offers more services for people with MS, provides more professional education programs, and furthers more MS advocacy efforts than any other MS organization in the world. We do this through the extensive research we support to find the cause, cure and improved treatments of the disease; the comprehensive services we provide to people with MS and their families; the professional education programs we offer to assist health care providers better serve their MS patients; and through our advocacy efforts on state and federal levels to encourage public policies supportive of the needs of people with multiple sclerosis. This is why we at the National Multiple Sclerosis Society are here. Multiple Sclerosis Awareness Foundation The mission of the MS Awareness Foundation is to provide information and service to achieve a more rewarding and buoyant life experience for those with Multiple Sclerosis, a long term, nonfatal neurological disease with no known cure. Our goal is to promote self-awareness and educate the public at large about the health and lifestyle challenges facing those affected with the disease. The primary focus is the directly affected and their immediate circles of family, friends, business and professional contacts. For those who have this disease, we provide factual information on how diagnoses are obtained, emotional reactions, rationalization, acceptance, available treatments and coping techniques in a positive, upbeat manner. For everyone, our factual information is intended to dispel myths, hearsay and ignorance. Multiple Sclerosis Association of America The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for individuals with multiple sclerosis. MSAA provides ongoing support and direct services to these individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles. Multiple Sclerosis Foundation As a predominantly service-based, non-profit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs. We strive to help make A Brighter Tomorrow by supporting research into its cause and cure as well as investigations of various medical and complementary treatment options. The scope of our services goes beyond that of a clearinghouse of pamphlets. Our priority is to serve with empathy, resourcefulness, and responsibility. We are here to listen, assist, and empower. RESOURCES Web sites: MSNet gathers and shares information on multiple sclerosis. The site includes stories, videos, an e-mail list, and a search engine. A great site aimed specifically at pre-teens with a parent who has MS. Children are helped around the site by a friendly character called "Myelin". The site has it's own chat room and forum together with helpful general pages about MS and a "Scary Questions" page to cover those questions that might be worrying small children about their parent and MS. A website designed specifically to help Teenagers come to terms with a parent having Multiple Sclerosis. The site has comprehensive resources including a Chat Room, a Message Board and topics ranging from Feelings to Depression. A very informative site with plenty of facts and advice to assist parents in helping their children better understand and cope with Multiple Sclerosis in the family. The site includes a chat room, message board, and plenty of resources on many topics parents may wish to talk to their children about with regards their illness. Publications from the Multiple Sclerosis Association of America: All About Multiple Sclerosis Multiple Sclerosis Association of America: Programs and Services Guide The Process and Medical Treatments Managing Symptoms Multiple Sclerosis and Cooling Publications from the Multiple Sclerosis Foundation: Multiple Sclerosis, Helpful Information for Patients and Families Pregnancy for Women with MS Complementary and Alternative Medicine for People with Multiple Sclerosis Intimacy and Sexuality with Multiple Sclerosis MS: A Guide for Families ____________________________________
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