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.
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 that affect the nervous system. They can help you manage symptoms such as weakness, tremors, and changes in thinking, which happen because of problems with your nerves. They also choose the medications for your MS.
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 primary care physician (PCP) who can help monitor your MS and catch problems with symptoms or disease progression. Because you typically see your PCP more than your neurologist, they may be better situated to catch warning signs before they get serious and send you to the right specialist for help.
- 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 understanding what you read or hear.
- A mental health professional, who helps you find ways to adapt to your changing health. They 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. They play 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.
Make the Most of Your MS Doctor Visits
It’s important to be able to discuss any concerns you have about your multiple sclerosis. Do your best to find a doctor who you're comfortable with -- someone who respects and listens to you. Think about other factors, too, like travel time for office visits and insurance coverage.
Once you've found a doctor who works well with you, hold up your end of the bargain. Be as prepared as you can for your appointments. Some steps to try:
- Keep track of how you’re feeling in a notebook, but remember that your symptoms may not all be due to MS. Note how often the symptoms happen, when you have them, and how bad they usually are.
- Give your doctor an updated list of all your medications and contact information for other doctors. Bring a list of your top questions to each of your visits.
- Ask your doctor about your biggest worry first. Are you feeling more depressed or anxious? Having trouble staying focused? Your doctor won't be able to guess what's on your mind.
- Speak up, even about issues that are hard to discuss, such as sexual changes, mood problems, or bowel troubles.
- Be as clear and concise as you can, but don't be afraid to ask for help understanding or for more information.
Let your doctor know if:
- You feel hopeless or like you can’t handle the disease.
- You’re afraid of any part of treatment, like needles or side effects.
- You’ve had a bad experience with other health care providers.
- You’re confused by different messages from members of your health care team.
Stay on Top of Things
If you have more than one specialist on your team, make sure they stay in touch. This is especially important if you have another health condition besides MS.
Use only one pharmacy if you can. Remember that your pharmacist is a good person to go to when you have questions about your medicine.
If you ever feel overwhelmed, reach out to a member of your team for support. You don’t have to go it alone. It may also help to focus on what you can do now to stay as healthy as possible.