If you've just been diagnosed with multiple sclerosis (MS), you may need to work with your doctor to put together a comprehensive team of multiple sclerosis support. Or, maybe you already are surrounded by an expert array of multiple sclerosis doctors and other health care providers at an MS center.
Either way, you may be confused or overwhelmed by all it takes to manage your MS care, especially if the coordination falls on your shoulders. Teamwork is even more important if your symptoms change or your disease progresses and your MS treatment changes course.
There are four types:
Relapsing-remitting. This is the most common form. You have flare-ups followed by periods without symptoms, called recovery.
Primary-progressive. With this type, you do not get the ups and downs. Your symptoms get worse over time.
Secondary-progressive. You get flares and recovery periods at the start, then symptoms steadily worsen.
Progressive-relapsing. This form is very rare. Symptoms worsen from the start. You experience...
Remember that you know best how MS is affecting your body, mind, and emotions. How you communicate with your health care team will make a big difference in the quality of MS care you receive as well as in your overall functioning and well-being. You can learn how to become a true partner in your MS health care team so that every part of you is well cared for. Here are a few things to keep in mind.
Understanding Who's on Your MS Care Team
A specialist called a neurologist is often the MS care team leader. That's because MS, as you know, is a condition that affects the nervous system. As such, you likely need help managing neurological symptoms such as weakness, tremor, and cognitive changes.
But with MS, your needs are varied. You may need emotional support, rehabilitation to help you maintain independence, practical support such as around employment or disability, and strategies for staying as healthy as possible. That's the benefit of having a comprehensive team working closely together.
Members of your MS treatment team may include:
A nurse, who educates about MS, supports the treatment regimen, and coordinates care.
A physiatrist, a doctor who designs a treatment plan to help you maintain as much function as possible.
A physical therapist (PT), who develops 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 (OT), who supports your independence and productivity at home and at work, using a variety of tools and strategies.
A nutritionist or dietitian, who provides guidance about preparing healthy, enjoyable meals.
A speech language pathologist (S/LP), who evaluates and treats any problems with speech or communication and evaluates swallowing or cognitive problems.
A mental health professional, who helps you adapt to and cope with your changing health, as well as diagnose and treat MS-related cognitive changes.
A urologist, who specializes in urinary problems in both men and women and problems related to male sexual organs.
What if you also have another disease? Then it's important that your primary care doctor be a part of your team. This person plays a pivotal role, for example, in making sure you don't have interactions between the medications you are taking. Check to make sure you have the right specialists managing this other condition. And, deal with urgent matters first.