Information for the Newly Diagnosed

What Does "Newly Diagnosed" Mean?

For many, being newly diagnosed finally gives a name to having some unexplained symptoms. Often before a diagnosis of multiple sclerosis (MS), a person might experience various symptoms, such as visual problems, numbness, or weakness, for example. Not knowing what is wrong and what might happen next is both worrisome and frightening. Once someone has been newly diagnosed with MS, he or she may actually feel a sense of relief in knowing the reason behind the different symptoms. From here, learning more about the disorder and its treatments will be of great help toward developing a positive plan for the future.

If you are newly diagnosed, you may have never heard of the term "MS" before, and some people even confuse the name with other disorders. Now, however, the term is linked to you personally. You may feel very alone, but you are not. The fact is, an estimated 400,000 people in the United States have MS, not to mention an estimated one to two-and-a-half million people in the world. And these estimates could be low, as a number of cases may not be reported or have not yet been diagnosed. Many individuals with MS continue to work and be active in the community -- some you may even know, but you are unaware of their diagnosis.

While finally getting a name for your symptoms may give you a sense of relief, you may also still feel frightened and out of control. After all, MS can be quite unpredictable with its hallmark flare-ups and remissions. You may feel you have lost your compass, your perspective, and everything experienced now is under the cloud of this new label of an "MS patient."

But while you may have been diagnosed with MS, this does not change who you are. You still look the same, have the same family and friends, and you have the same thoughts and dreams. When MS enters the picture, it usually requires some adjusments, but most people can still enjoy a full and productive life.

Here are some good things to know about MS

• For most people, it does not shorten their life expectancy, so the majority of individuals who are diagnosed with MS may plan on living into their golden years -- provided they are fortunate in general and take good care of themselves.
• Since the early 1990s, many long-term and symptom-management treatments and therapies have become available -- which makes living with MS more controllable and comfortable.
• Research is ongoing around the world with many new, promising treatments on the way.
• MS is not contagious.
• MSAA is available to provide a number of vital services, such as valuable and understanding phone consultation, informative and motivational publications and website, an extensive database of specialized MS services, MRI assistance, and equipment programs.

Things you can do

Some people who are newly diagnosed may experience confusion or even a sense of anger toward medical professionals and others, who may be providing you with too much information too quickly... or conversely, too little information. You will need time to adjust to the new diagnosis, so take things in at your own pace. You may want to know all you can right away, and if so, consulting reliable resources will provide you with accurate information on everything you need to know. On the other hand, you may want to learn about the disease a little at a time, and that is okay too. The important things are that you have confidence in the neurologist or physician you have selected for your care, and that you follow his or her treatment recommendations.

When you visit your neurologist it’s helpful to prepare yourself by writing a series of questions and concerns in advance. You may even decide to interview the neurologist before you make a definite selection. Asking questions like, "What happens if I have new symptoms, or if questions arise between visits?" In addition, you should be keeping your own personal health journal, as you are the best reporter of your symptoms to the neurologist.

Don't be surprised if you do not understand what is initially happening to your body, or if the unpredictability of symptoms cause you to feel constant anxiety. These are not unusual for someone who is newly diagnosed. But as you learn more about MS and find a treatment plan that works for you, these feelings will eventually subside. You may find that speaking with a professional is beneficial, and finding someone who specializes in helping individuals with long-term conditions such as MS is a good idea. Participating in a support group for newly diagnosed individuals can also be therapeutic.

Including your family and friends

Most family and friends will try to be supportive, but at times they might not know what to do. They may need reassurance from you, to find out how you are coping with your new diagnosis and any symptoms you may be experiencing. A few friends or family members may even look at you differently, because they don't understand how difficult this may be for you. This brings up the fact that many MS symptoms are "invisible," so while you might be experiencing numbness or extreme fatigue, you will still look the same to those around you.

Having open discussions with family members and friends can greatly help with their understanding of MS and your feelings. Explain to your family that you are still the same person that you were before the diagnosis. You don’t expect them to have all of the answers. Share with them that you may have good days and bad days -- and that you welcome their support through this process. If they can be present for you and simply listen, the experience will be life changing for everyone involved.

If you have children, what should you tell them?

Being honest with your children is the best plan. They know when you are secretive or elusive and that becomes more frightening, coupled with the keen ability of a child’s imagination. Remember that a child’s attention span is short. Find out what the child already knows and then share pieces of basic information as tolerated during the course of several days or weeks.

Explain to the child that you are still the same person. Families are always evolving and changing, just like life, but family members can support one another and overcome obstacles. By sharing your experiences in coping with MS, you are teaching your child about the journey of life. Be sure to emphasize support systems like extended family, teachers, and friends who really care. Children learn that families can work together to solve problems and move beyond a crisis.

MSAA offers a children’s book, Mommy’s Story, addressing this subject.

Developing a plan is key

Developing a comprehensive plan of care, one that is not limited to multiple sclerosis, is vitally important. This should be done together between you and your healthcare providers. Such a plan includes management of overall health issues that should not be neglected. Most importantly, patients need to be very careful not to blame every symptom on multiple sclerosis. Be sure that your primary care physician and your neurologist are advised of any symptoms you are experiencing, all treatments you are receiving, and any other conditions you may have.

Components of a comprehensive care plan may include:

• An initial long-term treatment therapy (such as Avonex, Betaseron, Copaxone, or Rebif) for early treatment of MS
• Symptom management; MSAA offers an informative video series on MS Symptom Management
• Physical therapy and exercise
• Nutritional counseling
• Stress management
• Psychosocial issues and counseling options

Employment concerns - Things to consider

An employee with a diagnosis of multiple sclerosis should consider whether or not to disclose their diagnosis to the employer. In disclosing your diagnosis, it may be easier for you to receive the accommodation necessary to continue to be effective in your position. However, there may be some risk in disclosure. Employers sometimes, due to their lack of knowledge about multiple sclerosis, may view the diagnosis negatively, and disclosure may in fact place the employee’s job at risk. The good news is that there are a variety of resources to assist employees with these complex decisions.

For more information on employment please read the articles from MSAA’s quarterly magazine The Motivator.The Spring 2005 Issue features a story on employment strategies and the Winter/Spring 2007 issue features a Health and Wellness column on this subject.

MSAA ENCOURAGES YOU AND YOUR FAMILY TO CONTACT OUR CLIENT SERVICE HELPLINE FOR MORE INFORMATION. TO REACH MSAA'S HELPLINE, PLEASE CALL (800) 532-7667.