If you've just been diagnosed with multiple sclerosis, you’ll need to work with your doctor to put together a team of support. Or maybe you already have a bunch of doctors and other health care providers at an MS center.
Either way, it can be confusing and overwhelming to figure out all it takes to manage your MS care, especially if the task falls on your shoulders. Teamwork is even more important if your symptoms change or your disease gets worse.
If you have progressive relapsing multiple sclerosis (PRMS), you’ll have distinct attacks of symptoms, called relapses. You may or may not fully recover after these flares. Between relapses, the disease continues to get worse slowly.
PRMS is the least common type of multiple sclerosis. It affects about 5% of people with the condition.
You may not be able to reverse the disease, but there are treatments that can ease your symptoms and make your relapses less severe and happen less often.
Remember that you know best how MS affects your body, mind, and emotions. How you communicate with your health care team will make a big difference in the quality of your care, and in your everyday life. You can learn how to become a true partner in your care so that every part of you gets the right attention. Here are a few things to keep in mind.
Get to Know Your Team
Your care team leader is often a doctor called a neurologist, who specializes in treating conditions like MS affect the nervous system. She can help you manage symptoms such as weakness, tremors, and changes in thinking, which happen because of problems with your nerves.
You also may need emotional support, rehabilitation to help you take care of daily tasks, practical support with employment or insurance, and strategies to stay as healthy as possible. That's the benefit of having a health care team that works closely together.
Members of your treatment team may include:
A nurse, who can teach you about MS, support your treatment plan, and coordinate your care
A physiatrist, a doctor who designs a treatment plan to help you move better
A physical therapist, who creates an exercise program to improve your strength, balance, and coordination
A social worker, who helps you connect to community resources such as disability applications
An occupational therapist, who helps you stay productive at home and at work, using different tools and strategies
A nutritionist or dietitian, who guides you on how to stick to a healthy diet
A speech language pathologist, who looks into and treats any problems with speech, swallowing, or trouble thinking
A mental health professional, who helps you find ways to adapt to your changing health. He also can diagnose and treat MS-related thinking problems.
A urologist,who specializes in urinary trouble in both men and women and problems with a man’s genitals
What if you also have another disease? Then your primary care doctor should be a part of your team, too. She plays an important role, for example, in making sure the medications you take will work well together. Check to make sure you have the right specialists to help you with this other condition.