Estimated reading time: 6 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Do you or a loved one have multiple sclerosis (MS)? This condition is a complex and challenging one to deal with. Not only does MS affect you physically and emotionally, but people with the condition have found it particularly hard to talk about with their doctors. Why exactly is that? MS symptoms can be difficult to describe and this can be very frustrating for patients especially as the condition changes. As a chronic autoimmune disease that affects the central nervous system, there is no one test that can confirm the diagnosis and many symptoms overlap with other conditions! This can lead to frustration in the person living with the disease, as they try to explain their illness and get clarity from healthcare professionals. Add to that the natural discomfort many people have talking to doctors, and you have a setup for a difficult conversation. The reality is you need an honest and open dialogue with your doctor to effectively manage your care. So how can you do that? Here is a guide from PatientsLikeMe to get the conversation started.
Why Talking About MS Is Hard
MS affects everyone differently, making it hard to describe. Some symptoms, like fatigue or cognitive issues, are invisible to other people. Add to this that MS can be unpredictable, with symptoms changing over time, and it can be frustrating to explain what you or a loved one is going through! Many people with MS also feel nervous about being dismissed or not taken seriously by their doctor. This uncertainty can make people hesitant to speak up about concerns they have. You have to remember that your doctor is there to help you. They need accurate information about your condition to give you the best care possible.
Non-relapsing secondary progressive multiple sclerosis (nrSPMS) is a form of SPMS. SPMS itself is one of the ways patients experience MS in their bodies. While nrSPMS does not have inflammatory relapses, symptoms can still fluctuate due to external factors like heat, stress and infections.
Getting Ready For The Doctor
To make the most of your appointments, it helps to be prepared. Ask a family member or friend to come along on the visit to provide support, listen and ask questions as needed. They can also take notes and audio record the visit to replay later. Check in with the doctor to be sure recording is permitted in the visit. Here are some steps you can take.
1. Keep a Symptom Journal
Because MS symptoms vary, keeping a daily journal can help you track changes over time. Write down:
- What symptoms you had and when they started.
- Whether the symptoms are constant or come and go.
- How severe the symptoms are on a scale of 1 to 10.
- What seems to trigger or worsen your symptoms.
- How symptoms affect your daily activities and emotions.
2. Make a List of Questions and Concerns
Ever feel like you are getting rushed into or out of the doctor's office? The reality is doctors often have blocks of time for each appointment, so it is important to focus on your most pressing concerns. Some patients write down their concerns and others make a short recording of their symptoms prior to the visit so they do not forget and replay what they recorded to the doctor. This way all of the important information is transmitted and recorded at home in a less stressful situation.
- Has my MS progressed since my last visit?
- What treatment options are there to help manage my symptoms?
- Are there any lifestyle changes that could help my condition?
- What can I do to stay mobile?
- How can I manage fatigue and pain better?
3. Be Specific About Your Symptoms
When talking about your symptoms, use clear language. Instead of saying, “I feel more tired than before,” try sharing some real examples.
- “I need to sleep 8 hours a night instead of 6.”
- “By the afternoon, I'm out of energy. I can't even do basic tasks around the house.”
- “I have a hard time concentrating for more than 10 minutes.”
4. Bring an Updated Medication List
Make sure your doctor knows about the medications, supplements, and vitamins you take. Some supplements or over-the-counter medications can interact with prescribed MS treatments, so full transparency is important. If you have stopped taking any prescribed medication, be honest about why. Your doctor should not judge you for that decision but does need to know so they can help find alternatives that work better for you.
What is Effective Communication?
When you are at the doctor's office, make sure your time is well spent! Here are some tips on what you should try to focus on at your appointments to ensure they know what you are dealing with. It is okay to share if you are struggling emotionally or physically. MS can affect mood, memory, and relationships, so talking these aspects with your doctor is just as important as the physical symptoms. If a particular treatment is not working or has side effects, let your doctor know so they can make adjustments.
If it is hard to explain your symptoms, try using a diagram or pointing to affected areas on your body. Bringing notes, an audio recording, or showing a symptom-tracking app can also help illustrate your experiences more clearly. If you feel your doctor is not fully addressing your concerns, speak up! You know your body best. If necessary, ask for a second opinion or seek a specialist who focuses on MS care. This is the hardest part for many people. The doctor is supposed to be the expert and questioning them or contradicting them feels wrong. While you should trust their advice, if you feel that they are not addressing one of your concerns you should say something.
Talking to your doctor about your non-relapsing SPMS is essential for getting the best care. By tracking your symptoms, preparing questions, being specific, and advocating for yourself, you can make your doctor’s visits more productive. Your healthcare team is there to support you! Help them by being an active participant in your MS care. You are not alone in this journey. Stay informed, stay engaged, and speak up for your needs.
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