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.
MSAA offers a collection of "Multiple Sclerosis information" (MSi) online educational videos and webinars. These are easy to access through MSAA's website by selecting the topics that are of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may provide helpful information for you. These include:
While finally getting a name for your symptoms may give you a sense of relief, you may also still feel frightened and confused. 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 adjustments, but most people can still enjoy a full and productive life.
For more information about MS and people who are living well with this disorder, MSAA's free Lending Library may be of help. Among the many resources that may be borrowed from the library is the book, Multiple Sclerosis: A Guide for the Newly Diagnosed (TJ Murray, CS Saunders, and NJ Holland, fourth edition, Demos Medical Publishing, 2013). In this book, the authors state: "The disease should not be in control - you are in control of your life, your attitudes, your relationships, your approach to problems, your interests, and your activities." They advise readers to get more information about MS, to beware of misinformation, and note: "People with MS are happiest and at their best when they live as normally as possible and carry out the activities they enjoy... if you feel like climbing a mountain and do not have symptoms and problems that limit you, go for it!"
Encouraging Information about MS
MS is not contagious, and in general, does not usually shorten one's life expectancy. Some individuals, particularly those who are significantly inactive, may experience the typical complications of a prolonged chronic illness (such as infection or pneumonia). Living a healthy lifestyle (under the direction of your doctor) in terms of diet, exercise, preventative healthcare, and not smoking, can help you to feel your best.
Since the early 1990s, many long-term treatments and symptom-management therapies have become available - which makes living with MS more controllable and comfortable. A 21-year prospective study of individuals (with relapsing-remitting MS) who began treatment with a disease-modifying therapy early in the disease, found that they experienced a longer lifespan than those who did not begin treatment as early.
Research is ongoing around the world with many new, promising treatments on the way. Several new disease-modifying therapies are either under review by the United States Food and Drug Administration (FDA), or are currently in clinical trials for eventually submission to the FDA, with the hope of receiving approval for the long-term treatment of MS.
MSAA is available to provide a number of vital programs and services, such as valuable and understanding phone consultation, informative and motivational publications and website, MRI assistance, equipment programs, and shared-management tools. These tools for encouraging patients to take an active role in the management of their MS include: My MS Resource Locator (an extensive database of specialized MS services); My MS Manager™ (a free application for iPhone and Android platforms to help individuals and care partners track details about their MS); and S.E.A.R.C.H.™ (materials to help patients and their healthcare team work together in identifying the most appropriate long-term treatment). MSAA also has a blog, "MS Conversations," featuring timely, interactive discussions of topics that are important to the entire MS community.
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 members of the healthcare team you have selected for your care, and that you follow their treatment recommendations.
When you visit your neurologist or other healthcare professional, prepare yourself by writing a series of questions and concerns in advance. You may even decide to interview the healthcare professionals before you make a definite selection. In addition, you should be keeping your own personal health journal, as you are the best reporter of your symptoms to your healthcare professionals.
Questions that may be helpful when seeing members of your healthcare team include:
Participating in a support group for newly diagnosed individuals can also be therapeutic. However, please keep in mind that some groups of people may work better for you than others. Finding a group that is a good fit for you is very important. Additionally, personal feelings may not always be appropriate for group settings, and sometimes these need to be processed alone, or with a member of your healthcare team, versus discussing them with a group of individuals you are still getting to know.
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 - when you are ready - 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. 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 and open 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 your child already knows and then share pieces of basic information as tolerated during the course of several days or weeks.
Explain to your 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 two children's books, Mommy's Story and Daddy's Story, both of which address this important and delicate subject. MSAA's MSi program also features the online video, Talking With Your Children About MS: A Place to Begin.
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 healthcare team (including your primary care physician and/or your neurologist) is 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 the following topics, many of which are addressed on MSAA's website as well as Multiple Sclerosis information (MSi) online educational videos and webinar series:
Employment Concerns - Things to Consider
An employee with a diagnosis of multiple sclerosis should consider whether or not to disclose his or her diagnosis to his or her 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 a variety of resources is available to assist employees with these complex decisions.
Many people choose to work for reasons greater than money alone. The interaction with others, the feeling of completing a well-done task, and the need to feel valued in society, all make a paycheck so worthwhile. Individuals with MS may find that symptoms such as increased fatigue, limited mobility, and visual changes may impact their ability to work. While the symptoms of MS can often be managed, job accommodations may be necessary to continue to work productively.
Some people with MS remain in their jobs with little or no modifications to their present working situation, while others may decide to leave their current position to be retrained to do something else. Fortunately, government funding is available for individuals with disabilities to receive the help they need to enter, re-enter, or remain in the workforce. This assistance enables men and women with MS to find the right occupation, work environment, work schedule, and game plan for their unique circumstances.
For more information on employment, please read the following articles from MSAA's magazine The Motivator: "Employment Strategies" and "Breaking Up is Hard to Do".
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|Last Updated on Tuesday, 22 July 2014 10:45|