Many healthcare professionals are involved in the treatment and management of multiple sclerosis (MS). A general practitioner or internist may spearhead your treatment. They may work with a variety of other doctors to treat your MS. They may also assign out tests that can check for signs of progression. These other doctors will ultimately report back to your general practitioner.
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
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 alter or 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 a cognitive rehabilitation course of treatment 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 and teach about MS and related problems. They can also direct you or your loved one 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, 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 and help you adjust the layout and architecture so that you can easily maneuver.
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 and instruction regarding stress management and coping with the changes in a healthy way.
Registered dietitians provide nutrition and lifestyle counseling that can help you prevent complications of MS brought on by malnutrition. They can also help you adapt your diet and nutrition to your changing MS. Making appropriate diet changes can help you avoid experiencing significant weight gain. Gaining weight can make MS symptoms worse.
Social workers and patient advocates 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.
Have a Conversation
Your doctor shouldn’t be the only person asking questions during your appointments. It’s important to 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 handy at all times. Write down any questions that come up regarding your condition. Bring that notepad with you to appointment so you’ll remember your questions. It’ll also provide a place to take notes during your appointment.
Find Out Who You Call After Hours
Does your doctor provide a 24-hour assistance line? Can you have them paged 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 you leave for them. If not, ask if they have a recommendation for a trusted agency who can 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 their office to make sure they have sent results to your internist, general practitioner, or whichever doctor is spearheading your treatment. Otherwise, your doctor may not be able to report back to you on the results, and you will likely have to make another appointment for a later date.
Seek Help Elsewhere
You can always ask for a second opinion. You should seek one if your doctor leads you to believe you have explored all possible treatment options. Do not take “no more options” for an answer.