The Multiple Sclerosis Support Center

Every person is unique, but when you face a challenge like multiple sclerosis, you are never alone. Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web and assembled links to the very best multiple sclerosis resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this multiple sclerosis guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: Best Resources for Multiple Sclerosis

• MayoClinic.com - Multiple Sclerosis The Mayo Clinic is renowned for its work on multiple sclerosis. This site can help you understand everything from your symptoms and diagnosis through to treatment options. If you've just been diagnosed or know someone who has, this is a great place to begin your journey.
• National MS Society If you're looking for straight answers there’s no place better to begin your search than right here at the National Multiple Sclerosis Society’s website. Learn about your treatment options and discover a whole world of resources available to you.
• WebMD Multiple Sclerosis (MS) Center: Symptoms, Treatments, Diagnosis, Stages, and Causes WebMD provides a host of answers to common questions about multiple sclerosis in language you can easily understand. You can also talk to others who have MS; find a glossary of terms you'll need to know; and get the latest news about treatments for MS.

The Big Picture

Multiple sclerosis (MS) is a chronic and progressive disorder of the nervous system in which the myelin sheath around certain nerve fibers breaks down, leaving the raw nerves exposed. At present there is no known cure.

Multiple sclerosis afflicts more than 2.5 million people worldwide and almost half a million in the U.S.

Doctors still do not know the exact cause of MS but in recent years they have made some interesting discoveries. For example, MS is much more prevalent in temperate climates and decreases as one nears the equator. Also, people who move from an area where MS is prevalent prior to adolescence to an area where MS is not common are less likely to contract the disease later in life.

MS does not affect everyone exactly the same. Once diagnosed, it's important for you to learn as much about your case as possible. Don’t be afraid to ask your doctor questions and spend time researching the disease to learn more; new treatments and strategies for managing MS are being discovered all the time. To keep up on treatment and learn more about symptoms, check out these overviews:

• National MS Society: Treatments
• National MS Society: Symptoms

Your Multiple Sclerosis

Since MS affects different individuals differently – and since it is also a progressive disease – it is important that you understand what type and what stage your MS is in to better plan your treatment. You can get an excellent overview at:

Multiple Sclerosis Foundation: Treatment

Since MS affects different people differently it can sometimes be hard to diagnose, so you may want to get a second opinion. The Johns Hopkins Neuroimmunology and Neurological Infections Remote Second Opinion Program offers a second medical opinion to those who can't travel to Johns Hopkins Hospital in Maryland.

Johns Hopkins Neuroimmunology and Neurological Infections Remote Second Opinion Program

Your World

After being diagnosed with a progressive disease such as MS it's understandable if you find yourself experiencing a flood of emotions. It's important now to talk to those you love and share what you're feeling; when you're ready you may also want to consider finding a support group. To help get a handle on your emotions visit the WebMD support group message board:

Multiple Sclerosis

After a diagnosis such as MS it can be difficult to know just what to tell family and friends. As difficult as this diagnosis is for you, it is also hard on those who love you. For helpful advice on what to say visit this About.com page for the newly diagnosed:

Talking About MS - How to Talk About Multiple Sclerosis

Multiple Sclerosis Myths

• The 10 Biggest Myths About MS
• Exercise & MS
• Learn the Truth About New Myths as They Arise

Information and Recommended Links for Survivors

• This site from the University of Washington Medical Center offers good advice for dealing with MS for both you and those who love you: Coping with MS - Strategies for You and Your Family
• Coping with MS has been compared to riding a rollercoaster blindfolded. This Canadian site has heartfelt advice on how you can not only get through this ordeal, but thrive: Support for People Living with Multiple Sclerosis
  

Types of Treatment

Medications

A variety of drugs are used to treat different aspects of this difficult disease and to slow its progression. In this article from the Mayo Clinic, several drugs and their benefits and side effects are discussed:

Multiple Sclerosis Treatment

There's no cure yet for MS, but there are treatments to manage symptoms, which can range from mild to severe, and give you more symptom-free days:

National MS Society: Treatments

Multiple sclerosis acts not only in different ways in different people, it can also show up in different ways within an individual. That's why there is no one treatment that works for everyone and there probably isn't one course of treatment you'll follow for the entire time you have MS. Learn what some of your alternatives are, including interferon drugs, at this Medicinenet.com page:

Multiple Sclerosis Causes, Types, Symptoms, Diagnosis, Treatment, and Prognosis Information

Possible Treatment Side Effects

Fatigue and flu-like symptoms are common side effects of some MS drugs. This WebMD page discusses frequently used drugs and their side effects:

Multiple Sclerosis: Drug Therapy

New Therapies

If you want to find out the latest thinking on treatment, check out the National MS Society's roundup of research news:

Research News

Holistic Treatments

The National MS Society covers a wide variety of holistic treatments in this page, from biofeedback and acupuncture to nutritional changes and yoga:

National MS Society: Complementary and Alternative Medicine

If you're interested in learning more you may want to buy the Society's 2007 book on the subject:

Complementary and Alternative Medicine and Multiple Sclerosis 

Home Therapies

There's a lot you can do at home to manage your symptoms. Here's the National MS Society's round-up of advice on healthy living approaches like exercise, diet, and stress management:

Healthy Living with MS

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or set up your own.
• Interact and provide updates on your profile or our forums.
  

Insurance & Work Matters

Insurance Matters

You may have a lot of questions regarding MS and your insurance. The National Multiple Sclerosis Society probably has the answers you're looking for:

National MS Society: FAQs About Health Insurance

Work Matters

Under the Americans with Disabilities Act you do not have to disclose any facts about your disease to your employer unless it affects your ability to perform your work-related duties. Check out this personal account on Healthcentral.com about whether, and how, to tell the people in your life about your MS:

To Tell or Not to Tell? That is the Question 

Health-care Providers Who Can Help

Multiple sclerosis is a challenging disease in part because it affects people often in such different ways. For this reason not all people will need to see the same types of doctors. It'ss important that you follow the advice of your primary care doctor and see the recommended specialists:

Doctors and Medical Specialists for Multiple Sclerosis

Resources to Find Doctors

• Start with your primary care doctor; he will be able to direct you to the specialists you need. If you feel that you need additional medical resources this site can help: Healthcentral.com: Multiple Sclerosis Doctors and Hospitals
  

The Emotional Rollercoaster

Living each day with the knowledge that you have a progressive neurological disease is a huge emotional strain for most MS patients. For many people, the emotional aspects of this disease can be worse than the physical ones. What’s important is that you continue living your life normally, participating in the same daily activities you've always enjoyed.

Support groups are also important. Keep phone numbers of your support team handy at all times. Find Web sites with success stories of people who have MS and still achieved their goals. Developing a positive mental attitude will go a long way in smoothing out the emotional rollercoaster you’re sure to be on at times.

Books Survivors Recommend

• Coping When a Parent has Multiple Sclerosis
• Employment Issues and Multiple Sclerosis
• When the Road Turns: Inspirational Stories About People with MS

What Survivors Wish They’d Known

MS shows up differently in different people.

The disease is not a death sentence and there are usually ways to improve your situation, even with advanced MS. Arm yourself with good information so you can deal with your illness in the way that’s best for you.

Communicating with Your Health-care Providers

Don't be surprised if, when your doctor talks to you about your condition, your mind simply shuts down, or if, after your appointment you can't recall much of what your doctor said. This is common; you can solve this problem by bringing a friend or family member with you to your appointments. Encourage your friend to ask questions and to take notes. Don't be afraid to ask any questions you feel you need the answer to, even if you may be scared of the answer or feel it's an answer you should know already. Ignorance won't help you fight this disease, but information will.

Write down any questions you have before going to your appointment and don’t be afraid to ask your health care provider to repeat things or to explain them in a way you can better understand.

Dealing with Multiple Sclerosis: Information and Recommended Links for Co-Survivors

How you can help

• Assist your friend or family member with their day-to-day duties or chores. Strive to find a balance between helping and allowing them to do things for themselves; you do not want to increase their stress or make them feel they are becoming a burden.
• Preserve your friend or family member's daily activities. It's normal to feel protective but excluding patients from activities or decisions can contribute to  feelings of helplessness and being a victim.
• Involve your friend or family member with others. Don't focus exclusively on their disease and treatment plan when interacting with them. Talk to them about yourself or make plans to visit friends and loved ones. A survivor involved with others has a better chance of avoiding feelings of abandonment.

What to say

• "I will support your decisions about treatment."
• "Is something wrong -- do you want to talk about it?"
• Tell them how much you care about them.

What not to say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every hospital and spend as much money as it takes to get you well."
• "You won't have to lift a finger; I'll do everything."

Things you can do for a survivor every day

Offering day-to-day support is a great gift to give a family member with multiple sclerosis or a friend/neighbor that has been stricken with this disease. If the survivor isn't a family member, help out the patient's family when they're at the hospital or out of town by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the survivor is a family member, help out with chores or other duties they may have fallen behind on.

How to build a support network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates.

How to help a survivor deal with day-to-day challenges

• Preparing the School for Your Child with MS: Multiple Sclerosis in Children
• Tips on Returning to Work With Multiple Sclerosis: Work & Multiple Sclerosis

Since MS is a progressive disease you don't recover from it in the sense that it goes away forever. But you may have many long periods in your life where you have no relapses, exacerbations or flare-ups. When you enter a recovery or remission period, you may want to assess and share with others how you feel emotionally, mentally, and spiritually. Recovering from a disease like this is almost as shocking as hearing the diagnosis for some people, in that it can be hard to go back to "normal" life or trust that you really are healthy. Telling your story and sharing your experiences can not only put into perspective your thoughts and feelings but can provide hope to others who are going through a similar journey themselves.

Remission / Recovery / Recurrence

Dealing with a remission of MS can be difficult because recurrence of the disease is so common. In fact, it is not uncommon for MS patients to have relatively long periods of being symptom-free and then have the disease reassert itself. Unfortunately there is no cure for MS. Check out this site to read doctors' and patients' views of remission:

About.com - Multiple Sclerosis

Because the cause of MS is poorly understood, there's little anyone can do to prevent it or hold off a relapse. Read more about prevention of MS at this WebMD page:

Multiple Sclerosis (MS) - Prevention

For uplifting and encouraging stories of multiple sclerosis patients, take a look at:

• McDougall Program Success Story: Stop Multiple Sclerosis
• Trevis Gleason's Multiple Sclerosis Blog

Give Back

What helped you while you were dealing with your diagnosis of MS; undergoing treatment; and moving into remission/recovery? Take a look back at your journey and share with others what helped you and what you wished you would have known or done. You can create a profile, reach out to other survivors, join support circles, or share your story by following the links at TheSurvivorsClub.org. Check out some of the best charities for supporting multiple sclerosis research or offering support to survivors.

America's Charities - Multiple Sclerosis

Though MS itself usually doesn't cause death, as with many diseases, patients with advanced MS and their families may find they are unprepared when the worst case happens. If you find out that your disease has progressed to the point that treatment is no longer effective, it's important to understand how to deal with this.

• Trevis Gleason's Multiple Sclerosis Blog -- "Death from Multiple Sclerosis"