Establishing a two-way, open dialogue with your healthcare providers will help you feel confident in your treatment plan, capable of responding to changes, and prepared to alter or adjust your plans as your multiple sclerosis (MS) advances and changes.
Many healthcare professionals are involved in the treatment and management of MS. A general practitioner or internist may spearhead your treatment and serve as a figurative head of treatment. He may utilize a variety of other healthcare professionals to treat your MS and test for signs of progression, but most of these caregivers will report back to him. For your own health and well being, this is a very 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 be able to receive adequate and timely treatment because your health history is quickly accessible.
Your Care Team and Their Roles
Neurologists are medical specialists trained to evaluate your central nervous system and monitor for signs of progression.
A neuropsychologist specializes in cognitive abilities and training. A neuropsychologist can evaluate and prescribe a cognitive rehabilitation course of treatment if your MS is causing memory, attention, information processing, or reasoning difficulties.
Nurses are the unsung heroes of treating all medical conditions. Nurse educators may work with you and your family and teach about MS and related problems. They can also direct you or your family to local or national groups that specialize in MS treatment and care. In addition to their role as caregivers and facilitators of assessment tests, nurses can help you and your family coordinate at-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. 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.
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 help counsel each of you and instruct you in ways to manage stress and cope with the changes in more healthful ways.
Registered dietitians provide nutrition and lifestyle counseling that can help you prevent complications of MS brought on by malnutrition.
Social workers provide counseling and referrals for patients and their families. They can also help establish connections to community, local, or national agencies that may be able to provide assistance or support.
Make the Most of Your Office Visits
Your doctor shouldn’t be the only person asking questions during your appointments. It’s important you ask him 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 handy at all times—jot down any questions that arise. Bring that notepad with you to an appointment so you’ll remember your questions but also have a place to take notes when your doctor is speaking with you.
It’s also important you communicate with your doctor your concerns about how MS will affect your life. The more he learns about you, the better his recommendations for treatment.
Find Out Who You Call After Hours
Does your doctor provide a 24-hour assistance line? Can you have him paged in the middle of the night? Will he accept and respond to emails? All of these questions are important to ask your doctor and his 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 left for him. If not, ask him if he has a recommendation for an agency he trusts to answer your questions in an informed way.
Follow-up Before An Appointment
If you visited another member of your care team for a test or assessment, follow-up with his office to make sure they have sent results to your internist, general practitioner, or whichever healthcare professional is spearheading your treatment. Otherwise, your doctor will not be able to report back to you on the results, and you will have to make another appointment for a later date.
Assess Your Situation Often
MS is a disease of constant change. Each day is different, and will bring with it new challenges. For that reason, it’s important you work with your doctor and healthcare team to constantly update and improve your treatments, lifestyle modifications, and any other part of your life that must respond to the progression of MS.
Seek Help Elsewhere
If, during the course of treatment, your doctor leads you to believe you have explored all your possible treatment options and you have no venues left for improving your disease care, it’s time to find another doctor—one who will partner with you and your family members to help you maintain your quality of life and mange your symptoms. Do not take “no more options” for an answer.