Understanding Multiple Sclerosis
Multiple sclerosis (MS) is a complex disease that's both difficult to understand and to live with. If you want answers, you'll find them on the Web. The nation's top MS research foundations, clinics, support networks, and health sites provide extensive information on the background of the disease, treatment options, coping, research, and much more. Use this guide to increase your understanding of MS, and become proactive in caring for yourself or your loved one.
Expand All Guide SectionsWhat is Multiple Sclerosis?
Multiple sclerosis is a chronic disease of the central nervous system that, according to the Mayo Clinic, affects roughly 300,000 people in the United States. The prevailing theory is that the body's immune system turns on itself and attacks the layer of insulating tissue that protects the nerve fibers surrounding the spinal cord and brain, resulting in a variety of symptoms that may include muscle weakness, blurred vision, difficulty walking, depression, and paralysis.
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- Like most diseases and disorders, MS has inspired several publicly and/or privately funded foundations devoted to helping its sufferers through education and research. These foundations typically summarize and promote their programs and their latest findings on their Web sites, and are thus valuable sources of information. An example is found at the National Multiple Sclerosis Society's site, which clearly describes new and old research efforts.
- If you encounter unfamiliar medical terms while doing your research, consult a medical dictionary or encyclopedia. A good place to start is with the HealingWell.com glossary of MS-related terms. By using these resources you'll have a better chance of fully comprehending lingo-laden articles.
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The National Institute of Neurological Disorders and Stroke
has a multiple sclerosis information page that answers basic questions about what it is and provides contact information for 12 related organizations.
The National Multiple Sclerosis Society
reviews nine myths associated with MS, debunking each one with links to expanded information.
Mayo Clinic
has MS information covering the basics of what the disease is, its signs and symptoms, causes, diagnosis, treatment, and coping with the disease.
MedlinePlus
has an interactive, step-by-step tutorial on multiple sclerosis that provides a discussion of anatomy, the causes of MS, symptoms, treatment options, and more. The tutorial can be viewed in text-only format, or using a Flash Player.
MS Australia
has a comprehensive "Frequently Asked Questions" section that addresses the common questions and concerns one might have about multiple sclerosis. Questions include, "Is MS contagious?", "Can MS be cured?", and "What medications and treatments are available for MS?"
The University of Maryland Medical Center
has a patient education section that discusses possible causes of multiple sclerosis and reviews the risk factors.
YouTube
is better known for TV clips and silly home videos than as a source of quality medical information, but don't let that prevent you from watching this informative, narrated animation showing how multiple sclerosis affects the central nervous system.
Multiple Sclerosis Symptoms and Diagnosis
The signs and symptoms of MS vary wildly, not only from individual to individual, but from day to day. According to a primer on disabilities from Arizona State University, multiple sclerosis can have a person feeling great one day and horrible the next, with no warning or explanation. The disease is often characterized by weakness, numbness, and difficulty moving. In this section we'll direct you to sites that describe the symptoms of MS in more detail, and explain the tests doctors perform to diagnose it.
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- The list of symptoms that someone with MS might display is extremely long. Before jumping to conclusions about your condition, consult your doctor for an expert diagnosis.
- You'll often see the symptoms of MS separated into two categories: early and advanced. The "early" symptoms are those that characterize the onset of the disease, and the "advanced" symptoms are its mature effects. Be aware of this distinction in your research.
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The National Multiple Sclerosis Society
has a "Brochure" with overview of MS detection, that is found midway down the page. Toward the bottom of the page are overviews of testing procedures and diagnosis.
The University of California, San Francisco Medical Center
has a page describing the process by which MS is diagnosed. It lists the tests that are conducted as well as some illnesses that can mimic the signs and symptoms of MS.
Merck.com
lists the sensory, motor, and psychological and neurological symptoms people with MS experience. The "Diagnosis" section has an overview of how MS is diagnosed with more detailed accounts of particular tests.
All About Multiple Sclerosis
offers a comprehensive list of MS symptoms, broken down into categories: visual; sensory; motor; coordination and balance; bowel, bladder, and sexual; cognitive; and other symptoms. For each symptom you'll find a short description.
MedlinePlus
has an Encyclopedia that offers and overview of multiple sclerosis and provides a list of the common symptoms of the disease. Many of the symptoms are appended with links to expanded information.
MS Treatment and Management
Unfortunately MS is a progressive, chronic disease, meaning it gets worse over time, and there are no known cures. There are, however, a number of ways to manage the symptoms and treat the disease before irreparable damage has been done. This section outlines the ways doctors and MS patients are managing the disease.
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- The latest news on research toward alternative and innovative MS treatments can be found using news search engines like Topix.net. Topix has an MS portal that lets you directly access stories related to MS, from a massive list of sources, within hours of their publication.
- Consumer health sites occasionally have video content to supplements their articles. This video from WebMD, which covers a study conducted to determine whether the dietary supplement alpha-lipoic acid (ALA) benefits those suffering from MS, is one example.
- Doctors at the Mayo Clinic say MS can be treated in three primary ways: with medication, physical and occupational therapy, and experimental treatments. Read the objectives sought by the Mayo Clinic for each treatment.
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WebMD
has a "Multiple Sclerosis Guide" with an overview of MS treatment and care options. It has a wealth of articles covering issues like treating early symptoms, medication, deep brain stimulation, and controlling spasms.
The Cleveland Clinic
reviews the use of deep brain stimulation in treating multiple sclerosis. It explains what the treatment involves and how it works.
DrugDigest
provides lists of medications used in the management of multiple sclerosis according to the type of MS. Each drug therapy is presented with an explanation of how it works and its benefits.
The National Multiple Sclerosis Society
has a "Library" with information on chemotherapy as it is used to treat MS, MS medications, disease-modifying drugs, and plasmapheresis.
ClinicalTrials.gov
provides a list of studies currently or about to take place all over the United States. Each study notes if the researchers are recruiting volunteers.
Living with MS
Multiple sclerosis patients can live long lives, but the degenerative nature of the disease and its symptoms often have a profound effect on the day-to-day conduct of a patient's life. Use information on the following sites to learn about and prepare for the difficulties, obstacles, and hurdles you might face.
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- For many people, part of coping with a chronic disease is connecting with others who have the same disease and similar experiences. Many association sites offer newsletters and support groups-it may be worth your while to sign up and get involved.
- Chronic illness like MS affects not only the person diagnosed, but his family, too. Encourage your family members and friends to use the Web to learn more about MS and how they can help.
- YouTube contains several video diaries from MS sufferers, such as this one from user kwazykelli explaining what it's like to live with MS. Professionally produced videos about MS can also be found, including one entitled, "Faces of MS," produced by the Multiple Sclerosis Society of Canada. It offers insight into the lives of those afflicted by MS.
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The National Multiple Sclerosis Society
provides this section called "Living with MS" that includes an article, "For People Newly Diagnosed." It reviews topics such as how to tell other people about your diagnosis, how to answer questions about MS, numerous frequently asked questions, and available treatments.
The Accelerated Cure Project
provides this 24-page brochure in PDF format called "So, You Have Multiple Sclerosis...What's Next?" The brochure reviews the symptoms, where best to get information about MS, different treatments (including alternative treatments), and living with MS. This last section discusses MS and your family, working with MS, and tips for planning for the future.
WebMD
has a portal with information on the emotional aspects of living with MS. Learn about reducing stress and how to relax to keep your body from becoming physically stressed.
The Multiple Sclerosis Learning Center
offers this page on how to live with MS in the summer and maintain a cool body temperature. There are also links on topics like exercise, fatigue, and managing pain with MS.
MS Australia
has information on being a parent with multiple sclerosis. It reviews the special physical challenges you may face as a parent and provides practical tips for solving some of these problems.
Multiple Sclerosis Decisions
is a site for people in the United Kingdom who have multiple sclerosis. It's a tool to help you make decisions about your treatment and management of MS.
MS and Children
MS can be a difficult issue for children to wrangle with. Whether it's a loved one, friend, family member, or the child herself who is experiencing the condition, the uncertainty and severity can make MS confusing and hard to understand. The resources in this section are all about MS and children; they discuss how to speak with a child about MS, present kid-friendly educational content, and overview multiple sclerosis in children.
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- A Web site designed specifically for a teen or child can be invaluable when a crisis like the diagnosis of a chronic disease occurs in the family. Leaving the URLs for these Web sites available for your children or teens may be the best way to allow them to explore the sites on their own. Or you can invite your child to review the sites with you.
- Use these Web sites to facilitate, but not replace, discussion with your children. The Web, as helpful as it is, is not a substitute for open communication between you and your children.
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KidsHealth
has a section on teens and multiple sclerosis. Although MS is generally an adult disease, there are teenagers who are diagnosed with the disease. This section reviews, in teen-appropriate language, what MS is and what the symptoms are.
The National Multiple Sclerosis Society
has a library of information for people who have MS and those who love them. This page, called "Someone You Know Has MS," is a booklet for children who are affected because someone they love, probably a parent, has been diagnosed with MS. There is also a message by the author for parents.
MSWorld
provides many resources for living with MS. This section is for children and teens to help them understand MS while living with a parent or loved one who has the disease. There is a colorful newsletter for kids, and a chat room and message board for teens.
MS Australia
provides this 28-page booklet in PDF format, entitled "Has your Mum or Dad got MS?" In child-friendly language, the booklet describes what the disease is, how people get it, how the disease progresses, and management.
Caring for Someone with MS
When a person suffering from multiple sclerosis becomes dependent upon another for care, it's not unusual for one person, often the spouse, to become the main caregiver. But being thrust into this role can be a great source of anxiety and stress. If unprepared, an already difficult time can be exacerbated. This section is filled with sites that offer tips and advice for caregivers, addressing everyday issues about the care they provide, while also offering advice on taking care of themselves.
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- As a caregiver, you might be inclined to neglect your own well-being while focusing your energies elsewhere. Don't forget that your health is crucially important, because a burnt-out, tired, or sick caregiver isn't as effective as one at full strength.
- Much of the information you'll find pertaining to care-giving is broadly applicable, and not specific to MS. Approach your research with this in mind, and search for general information in addition to MS-specific information.
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CaringRoad.com
is dedicated to helping caregivers who care for people with chronic diseases. This section is about being a caregiver at home, with links to topics such as getting organized, modifying your home, and legal matters. Be sure to read up on how to care for yourself, too.
CarePages
is a social network for caregivers to share their experiences and support. See what other caregivers have written about their journey and share your own story. Register with a username and password to view the site's "CarePages" and to create your own.
The National Multiple Sclerosis Society
provides this brochure from its library entitled "Advanced Multiple Sclerosis: Complications and Caregivers." The article reviews when and how to find professional help and how to manage complications. See the list at the bottom of the page for more resources.
The National Caregivers Library
provides many resources for caregivers of people with chronic illnesses. Learn how to start a caregiver's journal and keep track of the care you are giving. Along the left-hand side are numerous links to other resources, such as checklists and forms, how to care for yourself as a caregiver, and end-of-life issues, to name a few.
The Well Spouse Association
strives to help the spouses of people who are living with disabling diseases. Here you'll find a list of support groups listed by state (including Canada). Click on your state to find a list of support groups with contact information.
The Multiple Sclerosis Society
in the United Kingdom offers a directory search to help you find respite care in your area. Use the clickable map or the search box to find a list of homes with addresses and links for further information.
Multiple Sclerosis Support
Connecting with others who've experienced life with MS is a valuable way to learn about overcoming the challenges posed by the disease. Learn how to make that vital connection using the sites in this section.
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- Support sites, forums, message boards, and chat rooms can all be used as support outlets. Some support groups and boards are moderated; others are not. Moderated Web sites are usually run by volunteers who are familiar with the particular issue and can ensure that the board conversations don't go off track. Unmoderated boards can be very useful, but beware that there may be people with an agenda different from yours. Always use caution when chatting on the Web.
- Support groups aren't only for getting help and advice-they're for giving it as well. Connecting with others to tell your story and offer advice can greatly benefit them, and give you a sense of purpose and fulfillment.
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The Multiple Sclerosis Society
in the United Kingdom provides support and opportunities to express yourself through discussion boards. The discussion boards are divided into sections for those who are newly diagnosed or awaiting diagnosis, caregivers, those with progressive MS, and other interests. You can keep your own personal diaries and share creative writing or artwork.
HealingWell.com
provides this message board for people with multiple sclerosis. You can read the postings as a guest but to post your own messages, you must register.
The National Multiple Sclerosis Society
has a database where you can search for your local chapter. If you're looking for a face-to-face community rather than a virtual one, simply enter your state or zip code.
MSWorld
offers a vibrant community for people living with multiple sclerosis. The site offers chat opportunities, a resource center, an online magazine, and message boards. There are "Special Guest Chats" featuring people living with MS or experts on the disease; transcripts of the guest chats are available on the site.
WebMD
hosts a "Multiple Sclerosis Support Group." Post questions and offer help to others or seek advice from other MS patients.
MS Australia
has chat rooms for different groups of people who are affected by multiple sclerosis. There is a room for those with MS who live in Australia, as well as groups for people with MS and their caregivers.
MS News and Research
Ongoing research into the causes, treatment, and prevention of MS makes for a constant stream of news. In this section we'll show you how to get the latest news on multiple sclerosis.
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- Some sites (PubMed, for example) either post or help you find abstracts (short summaries) of articles from professional journals. The full-length articles are only available to the paid subscribers of the journals. The abstracts, however, do give a good sense of the studies and their findings.
- Disease research is funded both publicly and privately. Research foundations, such as the National Multiple Sclerosis Society, actively promote the research conducted using the organization's funds, as a way to keep those who donate (as well as the general public) abreast of the latest findings. Nearly all research organizations publish this type of material online, making the "News" or "Research" sections of their Web sites valuable sources of information.
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MSNews
is a free service of the Accelerated Cure Project that aims to keep people informed on what is happening in the world of MS research. Read summaries of journal articles submitted by staff and volunteers of the site, or register to participate in discussion about the news.
Medical News Today
has a multiple sclerosis section that offers the latest news articles and press releases as they become available.
HealingWell.com
has up-to-date medical news about multiple sclerosis under "Feature Articles" and informational resources under "Get the Facts."
The New York Times
has links to several multiple sclerosis-related news stories in its Health section.
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