Many healthcare professionals are involved in the treatment and management of multiple sclerosis (MS). A general practitioner or internist may spearhead your treatment with a care team, working with a variety of other doctors to treat your MS. They may also assign tests that can check for signs of progression. The other doctors will ultimately report back to your general practitioner or internist.
For your own health and well-being, having a team is a good thing. Your medical history will be maintained in one location. Future doctors won’t lose time tracking down your medical records, and you’ll receive adequate and timely treatment because your health history is quickly accessible.
Your care team and their roles
Establishing a two-way, open dialogue with your doctors will help you feel confident in your treatment plan, capable of responding to changes, and prepared to adjust your plans as your MS advances and changes.
Neurologists are medical specialists trained to evaluate your central nervous system and monitor for signs of MS progression. If a general practitioner does not serve as the head of your care team, a neurologist often will.
A neuropsychologist specializes in cognitive abilities and training. They can evaluate and prescribe cognitive rehabilitation if MS is causing difficulties with memory, attention, information processing, or reasoning.
Nurses are the unsung heroes of treating all medical conditions. Nurse educators may work with you and your family to teach you about MS and related problems. They can also direct you or your loved one to local or national groups that specialize in MS care. In addition to their role as caregivers and test facilitators, nurses can help you and your family coordinate home care.
Occupational therapists can teach you new ways to perform everyday tasks that may become more difficult as MS progresses.
A physical therapist can help you stay physically active, even as MS advances. You can learn exercises and stretches that improve flexibility, coordination, and balance. A physical therapist can also help you adapt to the use of any assistive devices or mobility aids. In some cases, a physical therapist may visit your home. They can help you adjust the layout and architecture so that you can get around more easily.
As MS advances, a psychologist may be helpful for both you and your family. Advancing MS can cause distress, frustration, and anxiety. A psychologist can provide counsel, stress management techniques, and tips for coping with the changes in a healthy way.
Registered dietitians provide nutrition and lifestyle counseling that can help prevent MS complications from malnutrition. They can also help you adapt your diet to your changing MS. Making appropriate diet changes can help you avoid significant weight gain, which can make MS symptoms worse.
Social workers and patient advocates provide counseling and referrals for patients and their families. They can also connect you to community, local, or national agencies that may be able to provide assistance or support.
Have a conversation
Your doctor shouldn’t be the only person asking questions during your appointments. Ask them any questions you have about your disease, treatment, management, and symptoms. No question is too small or trivial when it comes to treating MS.
Keep a notepad with you at all times. Through the day, write down any questions that come up about your condition. Bring that notepad with you to your appointments so you’ll remember your questions. The notepad also gives you a place to take notes during your appointment.
Find out who you call after hours
Does your doctor have a 24-hour assistance line? Can you page them in the middle of the night? Will they accept and respond to emails?
All of these questions are important to ask your doctor and their staff. Often, questions about treatment or a symptom will come to you in the middle of the night. Find out if your doctor will respond to emails or phone messages. If not, ask if they can recommend a trusted agency who can give you informed answers.
Follow up before an appointment
If you visited a member of your care team for a test or assessment, follow up with their office to make sure they sent results to your internist, general practitioner, or whichever doctor spearheads your treatment. Otherwise, your doctor may not be able to report back to you on the results, and you’ll likely have to make another appointment for a later date.
Seek help elsewhere
You can always ask for a second opinion. For example, you should seek a second opinion if your doctor says you have explored all possible treatment options. Do not take “no more options” for an answer.