Information for Newly Diagnosed
WHAT DOES NEWLY DIAGNOSED MEAN?
- For many, being newly diagnosed finally gives a name to having some unexplained symptoms
- Once someone has been newly diagnosed with MS, he or she may actually feel a sense of relief
- You may feel alone, but you are not; an estimated 400,000 people in the United States have MS
- When MS enters the picture, it usually requires some adjustments, but most people can still enjoy a full and productive life
For many, being newly diagnosed finally gives a name to having some unexplained symptoms. Often before a diagnosis of 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 as many as 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 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.
THINGS YOU CAN DO
- You will need time to adjust to the new diagnosis, so take things at your own pace
- Having confidence in the members of the healthcare team you have selected, and following their treatment recommendations, are of great importance
- Write a list of questions and concerns in advance to prepare for any medical appointments
- Keep your own personal health journal, as you are the best reporter of your symptoms to your healthcare professionals
- Don’t be surprised if you do not understand what is initially happening, or if the unpredictability of symptoms causes you anxiety; this is not unusual, but as you learn more about MS and find a treatment plan, these feelings will subside
- Speaking with a professional can provide answers to your questions, while some find that participating in a support group for newly diagnosed individuals may also be of help
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.
View additional Patient Resources.
Don’t be surprised if you do not understand what is initially happening to your body, or if the unpredictability of symptoms causes 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. 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
- 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
- When you are ready, having open discussions with family members and friends can greatly help with their understanding of MS and your feelings
- Explain that you are still the same person that you were before the diagnosis
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.
WHAT TO TELL CHILDREN
- Being honest and open with your children is the best plan
- Explain to your child that you are still the same person
- By sharing your experiences in coping with MS, you are teaching your child about the journey of life
- Emphasize support systems like extended family, teachers, and friends
DEVELOPING A PLAN IS KEY
- A comprehensive plan of care, not limited to multiple sclerosis, is important
- This should be done together with your healthcare providers
- Patients need to be very careful not to blame every symptom on MS, and to inform their healthcare team of any new or worsening symptoms
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:
- Begin taking one of the FDA-approved, disease-modifying therapies for MS, if appropriate for you
- Managing the symptoms of MS
- Physical therapy and exercise
- Nutritional counseling
- Stress management
- Psychosocial issues and counseling options
