Although multiple sclerosis, also known as MS, was first diagnosed in 1849, the earliest known description of a person with possible MS dates from fourteenth century Holland. An unpredictable disease of the central nervous system, MS can range from relatively benign to somewhat disabling to devastating as communication between the brain and other parts of the body is disrupted.

The vast majority of people with MS are mildly affected, but in the worst cases MS can render a person unable to write, speak, or walk. A physician can diagnose MS in some people soon after the onset of the illness. In others, however, physicians may not be able to readily identify the cause of the symptoms, leading to years of uncertainty and multiple diagnoses punctuated by baffling symptoms that mysteriously wax and wane.

During an MS attack, inflammation occurs in areas of the white matter of the central nervous system in random patches called plaques. This process is followed by destruction of myelin (pronounced – MY-eh-lin), the fatty covering that insulates nerve cell fibers in the brain and spinal cord. Myelin facilitates the smooth, high-speed transmission of electrochemical messages between the brain, the spinal cord, and the rest of the body – when it is damaged, neurological transmission of messages may be slowed or blocked completely, leading to diminished or lost function. The name “multiple sclerosis” signifies both the number (multiple) and condition (sclerosis, from the Greek term for scarring or hardening) of the demyelinated areas in the central nervous system.

No one knows exactly how many people have MS. It is believed that, currently, there are approximately 250,000 to 350,000 people in the United States with MS diagnosed by a physician. This estimate suggests that approximately 200 new cases are diagnosed each week. MS is a chronic (life long) disease diagnosed primarily in young adults who have a virtually normal life expectancy. The economic, social, and medical costs associated with the disease are significant. Estimates place the annual cost of MS in the United States in the billions of dollars.

The Course of MS

Each case of Multiple Sclerosis (MS) displays one of several patterns of presentation and subsequent course. Most commonly, MS first manifests itself as a series of attacks followed by complete or partial remissions as symptoms mysteriously lessen, only to return later after a period of stability. This is called relapsing-remitting (RR) MS. Primary-progressive (PP) MS is characterized by a gradual clinical decline with no distinct remissions, although there may be temporary plateaus or minor relief from symptoms. Secondary-progressive (SP) MS begins with a relapsing-remitting course followed by a later primary-progressive course. Rarely, people may have a progressive-relapsing (PR) course in which the disease takes a progressive path punctuated by acute attacks. PP, SP, and PR are sometimes lumped together and called chronic (lasting a long time) progressive MS.

Twenty percent of the MS population has a benign form of the disease in which symptoms show little or no progression after the initial attack – these people remain fully functional. A few people experience malignant MS, defined as a swift and relentless decline resulting in significant disability or even death shortly after disease onset. However, MS is very rarely fatal and most people with MS have a fairly normal life expectancy.

Studies throughout the world are causing investigators to redefine the natural course of the disease. These studies use a technique called Magnetic Resonance Imaging (MRI) to visualize the evolution of MS lesions in the white matter of the brain. Bright spots on a T2 MRI scan indicate the presence of lesions, but do not provide information about when they developed.

Because investigators speculate that the breakdown of the blood/brain barrier is the first step in the development of MS lesions, it is important to distinguish new lesions from old. To do this, physicians give people injections of gadolinium, a chemical contrast agent that normally does not cross the blood/brain barrier, before performing a scan. On this type of scan, called T1, the appearance of bright areas indicates periods of recent disease activity (when gadolinium is able to cross the barrier). The ability to estimate the age of lesions through MRI has allowed investigators to show that, in some people, lesions occur frequently throughout the course of the disease even when no symptoms are present.

Life Events That Affect the Course of MS

While there is no good evidence that daily stress or trauma affects the course of Multiple Sclerosis (MS), there is data on the influence of pregnancy. Since MS generally strikes during childbearing years, a common concern among women with the disease is whether or not to have a baby. Studies on the subject have shown that MS has no adverse effects on the course of pregnancy, labor, or delivery – in fact symptoms often stabilize or remit during pregnancy.

This temporary improvement is thought to relate to changes in a woman’s immune system that allow her body to carry a baby: because every fetus has genetic material from the father as well as the mother, the mother’s body should identify the growing fetus as foreign tissue and try to reject it in much the same way the body seeks to reject a transplanted organ. To prevent this from happening, a natural process takes place to suppress the mother’s immune system in the uterus during pregnancy.

Women with MS who are considering pregnancy need to be aware that certain drugs used to treat MS should be avoided during pregnancy and while breast feeding. These drugs can cause birth defects and can be passed to the fetus via blood and to an infant via breast milk. Among them are:

• Prednisone
• Corticotropin
• Azathioprine
• Cyclophosphamide
• Diazepam
• Phenytoin
• Carbamazepine
• Baclofen

Unfortunately, between 20 and 40 percent of women with MS do have a relapse in the three months following delivery. However, there is no evidence that pregnancy and childbirth affect the overall course of the disease one way or the other. Also, while MS is not in itself a reason to avoid pregnancy and poses no significant risks to the fetus, physical limitations can make child care more difficult. It is therefore important that people with MS planning to have a family discuss these issues with both their partner and physician.

Immunotherapy and MS

As evidence of immune system involvement in the development of Multiple Sclerosis (MS) has grown, trials of various new treatments to alter or suppress immune response are being conducted. Most of these therapies are, at this time, still considered experimental.

Results of recent clinical trials have shown that immunosuppressive agents and techniques can positively (if temporarily) affect the course of MS – however, toxic side effects often preclude their widespread use. In addition, generalized immunosuppression leaves the patient open to a variety of viral, bacterial, and fungal infections.

Over the years, MS investigators have studied a number of immunosuppressant treatments. One such treatment, Novantrone (mitoxantrone), was approved by the FDA for the treatment of advanced or chronic (lasting a long time) MS. Other therapies being studied are cyclosporine (Sandimmune), cyclophosphamide (Cytoxan), methotrexate, azathioprine (Imuran), and total lymphoid irradiation (a process whereby the MS patient’s lymph nodes are irradiated with x-rays in small doses over a few weeks to destroy lymphoid tissue, which is actively involved in tissue destruction in autoimmune disease. Inconclusive and/or contradictory results of these trials, combined with the therapies’ potentially dangerous side effects, dictate that further research is necessary to determine what, if any, role they should play in the management of MS. Studies are also being conducted with the immune system modulating drug cladribine (Leustatin).

Another potential treatment for MS is monoclonal antibodies, which are identical, laboratory-produced antibodies that are highly specific for a single antigen. They are injected into the patient in the hope that they will alter the patient’s immune response. One monoclonal antibody, natalizumab (Tysabri), was shown in clinical trials to significantly reduce the frequency of attacks in people with relapsing forms of MS and was approved for marketing by the U.S. Food and Drug Administration (FDA) in 2004. However, in 2005 the drug’s manufacturer voluntarily suspended marketing of the drug after several reports of significant adverse events. In 2006, the FDA again approved sale of the drug for MS but under strict treatment guidelines involving infusion centers where people can be monitored by specially trained physicians.

Another experimental treatment for MS is plasma exchange, or plasmapheresis. Plasmapheresis is a procedure in which blood is removed from the patient and the blood plasma is separated from other blood substances that may contain antibodies and other immunologically active products. These other blood substances are discarded and the plasma is then transfused back into the patient. Because its worth as a treatment for MS has not yet been proven, this experimental treatment remains at the stage of clinical testing.

Bone marrow transplantation (a procedure in which bone marrow from a healthy donor is infused into people who have undergone drug or radiation therapy to suppress their immune system so they will not reject the donated marrow) and injections of venom from honey bees are also being studied. Each of these therapies carries the risk of potentially severe side effects.

Prognosis of MS

The 1990s – proclaimed the “Decade of the Brain” in 1989 by President Bush and Congress – have seen an unparalleled explosion of knowledge about neurological disorders. New technologies are forcing even complex diseases like MS to yield up their secrets. These burgeoning opportunities in the field of neurological research have prompted the National Advisory Neurological Disorders and Stroke Council to suggest that an effective treatment for and the cause of MS may be found during the Decade of the Brain. The former has already been achieved – scientists continue to diligently search for the latter. Their dedication is the best hope for a cure, or, better yet, a way to prevent MS altogether.

MS Research

Many advances, on several fronts, have been made in the war against Multiple Sclerosis (MS). Each advance interacts with the others, adding greater depth and meaning to each new discovery. Four areas, in particular, stand out.

Over the last decade, our knowledge about how the immune system works has grown at an amazing rate. Major gains have been made in recognizing and defining the role of this system in the development of MS lesions, giving scientists the ability to devise ways to alter the immune response. Such work is expected to yield a variety of new potential therapies that may ameliorate (to make something better or become better, improve) MS without harmful side effects.

New tools such as MRI have redefined the natural history of MS and are proving invaluable in monitoring disease activity. Scientists are now able to visualize and follow the development of MS lesions in the brain and spinal cord using MRI – this ability is a tremendous aid in the assessment of new therapies and can speed the process of evaluating new treatments.

Other tools have been developed that make the painstaking work of teasing out the disease’s genetic secrets possible. Such studies have strengthened scientists’ conviction that MS is a disease with many genetic components, none of which is dominant. Immune system related genetic factors that predispose an individual to the development of MS have been identified, and may lead to new ways to treat or prevent the disease.

In fact, a treatment that may actually slow the course of the disease has been found and a growing number of therapies are now available that effectively treat some MS symptoms. In addition, there are a number of treatments under investigation that may curtail attacks or improve function of demyelinated nerve fibers. Over a dozen clinical trials testing potential therapies are under way, and additional new treatments are being devised and tested in animal models.

MS Research That Remains to be Done
The role of genetic risk factors, and how they can be modified, must be more clearly defined. Environmental triggers, such as viruses or toxins, need to be investigated further. The specific cellular and subcellular targets of immune attack in the brain and spinal cord, and the subsets of T cells (immune system cells that develop in the thymus gland) involved in that attack, need to be identified. Knowledge of these aspects of the disease will enable scientists to develop new methods for halting – or reversing and repairing – the destruction of myelin (A fatty covering insulating nerve cell fibers in the brain and spinal cord, myelin facilitates the smooth, high-speed transmission of electrochemical messages between these components of the central nervous system and the rest of the body. In MS, myelin is damaged through a process known as demyelination, which results in distorted or blocked signals) that causes the symptoms of MS.

You Can Help MS Research

The NINDS contributes to the support of the Human Brain and Spinal Fluid Resource Center in Los Angeles. This bank supplies investigators around the world with tissue from people with neurological and other disorders. Tissue from individuals with MS is needed to enable scientists to study this disorder more intensely.

Prospective donors may contact:

Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
310-268-3536
24 hour pager: 310-636-5199
Email: RMNbbank@ucla.edu
www.loni.ucla.edu/~nnrsb/NNRSB

For More Information about MS

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
800-352-9424
www.ninds.nih.gov

Information also is available from the following organizations:

Clearinghouse on Disability Information
Special Education & Rehabilitative Services Communications & Customer Service Team
550 12th Street, SW, Rm. 5133
Washington, DC 20202-2550
www.ed.gov/about/offices/list/osers
Tel: 202-245-7307 202-205-5637 (TTD)
Fax: 292024507636

International Essential Tremor Foundation
P.O. Box 14005
Lenexa, KS 66285-4005
staff@essentialtremor.org
www.essentialtremor.org
Tel: 913-341-3880 888-387-3667
Fax: 913-341-1296

Provides educational information, funds research in tremor disorders, and offers services and support to individuals diagnosed with essential tremor, their families, and health care providers. Information and support includes a quarterly newsletter, support groups, and physician information and referrals.

Multiple Sclerosis Association of America
706 Haddonfield Road
Cherry Hill, NJ 08002
webmaster@msaa.com
www.msassociation.org
Tel: 856-488-4500 800-532-7667
Fax: 856-661-9797

National, non-profit organization dedicated to enhancing the quality of life for those affected by multiple sclerosis. MSAA provides ongoing support and direct services to individuals with MS and their families and works to promote a greater understanding of the needs and challenges of those who face physical obstacles.

Multiple Sclerosis Foundation
6350 North Andrews Avenue
Ft. Lauderdale, FL 33309-2130
support@msfocus.org
www.msfocus.org
Tel: 954-776-6805 888-MSFOCUS (673-6287)
Fax: 954-351-0630

Dedicated to helping people with MS, the Multiple Sclerosis Foundation offers a wide array of free services including: national toll-free support, educational programs, homecare services, support groups, assistive technology programs, publications, a comprehensive website, and more programs to improve the quality of life for those affected by MS.

National Rehabilitation Information Center (NARIC)
4200 Forbes Boulevard
Suite 202
Lanham, MD 20706-4829
naricinfo@heitechservices.com
www.naric.com
Tel: 301-459-5900/301-459-5984 (TTY) 800-346-2742
Fax: 301-562-2401

National Ataxia Foundation (NAF)
2600 Fernbrook Lane North
Suite 119
Minneapolis, MN 55447-4752
naf@ataxia.org
www.ataxia.org
Tel: 763-553-0020
Fax: 763-553-0167

Encourages and supports research into the hereditary ataxias, a group of chronic (lasting a long time) and progressive neurological disorders affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.

National Multiple Sclerosis Society
733 Third Avenue
6th Floor
New York, NY 10017-3288
nat@nmss.org
www.nationalmssociety.org
Tel: 212-986-3240 800-344-4867 (FIGHTMS)
Fax: 212-986-7981

Funds research, helps families stay together, provides accurate and up to date information, helps with employment issues, offers free counseling, runs self help groups, advocates for people with disabilities, and provides referrals to medical professionals.

American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48201-2227
aarda@aarda.org
www.aarda.org
Tel: 586-776-3900 800-598-4668
Fax: 586-776-3903

National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity. Dedicated to the eradication of autoimmune diseases through fostering and facilitating collaboration in the areas of education, research, and patient services.

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

Federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Well Spouse Association
63 West Main Street
Suite H
Freehold, NJ 07728
info@wellspouse.org
www.wellspouse.org
Tel: 800-838-0879 732-577-8899
Fax: 732-577-8644

International non-profit organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses / partners and children of the chronically ill and / or disabled.

Paralyzed Veterans of America (PVA)
801 18th Street, NW
Washington, DC 20006-3517
info@pva.org
www.pva.org
Tel: 202-USA-1300 (872-1300) 800-424-8200
Fax: 202-785-4452

Non-profit organization dedicated to serving the needs of its members – more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabilities – through advocacy, education, and research programs.

Accelerated Cure Project for Multiple Sclerosis
300 Fifth Avenue
Waltham, MA 02451
info@acceleratedcure.org
www.acceleratedcure.org
Tel: 781-487-0008
Fax: 781-487-0009

National non-profit organization dedicated to the creation and execution of a plan to cure MS by determining its causes. Developing a multi-disciplinary blood, tissue, and data bank.

Source: www.ninds.nih.gov – September 1996