As part of your MS care, you may have to follow up with many different members of a health care team: primary care doctor, MS specialists like neurologists, physical and occupational therapists — the list goes on. This can seem overwhelming at times.
One MyMSTeam member even asked, “Why do I feel like a crazy person when I talk to the doctors about everything that’s going on with me?”
You shouldn’t feel that way. It is the job of the medical professionals treating you to understand what you are going through and address your concerns, either themselves or through a referral to someone who can help more. This article aims to serve as a guide for making the most of your multiple doctor visits and appointments. Hopefully, these tips can take away much of the stress that might come with this process.
Particularly in the era of the coronavirus pandemic, where more and more doctor’s appointments are happening via telehealth — where a doctor cannot physically examine you — it is important to discuss the different ways MS is affecting you. Even during in-person visits, doctors generally learn much more from taking your history (interviewing you) than they do in a physical exam.
MS symptoms come in a wide range — losing sensation, not being able to move certain body parts, mental or emotional difficulties, etc. Remember to tell your provider what your symptoms are, especially "invisible symptoms" like difficulties thinking or concentrating or any unusual sensations you feel before an MS attack.
Make sure to explain when your symptoms occur, and in what pattern. Most people with MS have symptoms that hit them at specific times every so often (relapsing), and others have symptoms that gradually get worse (progressive).
Health care is a team sport, with you at the center. Comprehensive care involves a diverse set of health professionals — from doctors to therapists — addressing all your needs. Make sure to share how your MS symptoms affect other parts of your life.
For example, do your symptoms prevent you from doing your job or doing certain activities at home? If so, someone like an occupational therapist (OT) may be able to help you. If you have trouble walking around without tripping, a physical therapist (PT) may be able to recommend walkers and other assistive devices to help you get around.
MS can affect your relationships with those you love, who may become your caregivers. Tell your provider about any issues at home. There are support groups and other resources that can help specifically for addressing the stresses and strains in your relationships. Therapists and other mental health professionals can help you manage anxiety and depression, as this is very common among people with MS. Your providers should address your wellness in addition to your health.
Many treatments, especially medications, have side effects. Some might work better for others than they do for you and vice versa. Make sure that your provider knows what works and what doesn’t in order to help you most effectively.
Tell your provider if the side effects from these drugs are significantly affecting you. Your doctor can then adjust your treatment plan to find a regimen that causes fewer side effects.
The field of neuroscience is advancing very quickly, including the area of autoimmune diseases like MS. New treatments are coming out every year, along with clinical trials for these cutting-edge treatments. Telling your providers what is and isn’t working may qualify you for some of these newer treatments.
If you are ever confused about what your provider is telling you, ask them to clarify. It is their duty as health care professionals to explain what they want to do in words that you understand. Health literacy — understanding instructions and advice from doctors and other providers — is a huge issue that affects people’s health, both in MS and medical care in general.
Before coming to your appointment, it may be wise to prepare a list of questions or bring a family member who can listen in as well. During the visit, it is also OK to take notes on what you hear and confirm your understanding with your provider.
Most of your MS treatment plan involves working with providers from different fields. Some of this communication may occasionally be lost in translation. Therefore, be sure to inform other health care providers of any changes in treatment or diagnosis from the other people you are seeing. This is where your notes from other visits can be very helpful!
Working with multiple providers often also means going to different care centers. Some of these places, such as specialized multiple sclerosis centers, may not be included in your health insurance plan’s network. Many surprise bills can come from referrals to places that are not covered by your insurance.
Be sure to check before your visits which services and medical centers are covered by your insurance company. During your visit, let your provider know about your insurance plan and that it is important for you to go somewhere that is covered, if possible. Doing this may save you a lot of money when it comes time to pay.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 166,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Do you or a loved one have questions about follow-up with providers for MS? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.