Symptom Management

Nine Tips for Talking with Your Doctor about MS Symptoms

By Gay Falkowski

As a growing number of doctors follow a patient-centered approach to MS care, it becomes more important than ever for you to get involved in decisions regarding your disease management plan. Participate! You can begin by taking time to focus on how the disease is affecting your body, mind, and quality of life. Get attuned to the changes MS brings. When you’re aware of your needs, it becomes easier to describe them to members of your healthcare team.
If possible, keep a daily journal of how you’re feeling and whether any specific symptoms are causing problems. When shared with healthcare providers, this information can be valuable in tailoring a treatment plan specific to your MS – because MS affects everyone differently.

Before you head to your next appointment with your MS specialist, review your journal and look for any specific trends or symptoms that stand out. Write them down so you’ll be ready when your doctor asks how you’re doing. These tips may help you focus on communicating (in a short amount of time) the information that really matters:
1. Duration: Note when a symptom began. Is it continuous or does it come and go? Have you had it before? If so, what was done to treat it last time and how did that work?
2. Severity: How bad is the symptom? When discussing symptoms such as pain, some doctors like to use a scale from 1 to 10. Being more descriptive helps, too. Instead of telling your doctor you are in pain, use words like dull, throbbing, intense, or sharp to describe what kind of pain it is.
3. Location: What part or parts of the body does the symptom affect and does that change over time? If it helps to clarify, point to the places on your body that are affected.
4. Causes: Do you know what triggers your symptom? Your journal becomes a useful tool for identifying actions or events that consistently result in a symptom flare. On the flip side, what makes the symptom better?
5. Effect: Share how much a symptom is affecting your feelings, work, or relationships. For example, does incontinence make you depressed or anxious? Are you afraid to leave the house? Is your fatigue so debilitating you can’t keep up at work? Examples such as these can help your doctor assess severity as well as assign treatment priority.
6. Context: Explain measurable differences in how you carry out daily activities now compared with what you were able to do before the symptom started. Rather than saying “I can't do things like I used to,” be specific. Some examples are “I'm sleeping 12 hours a day instead of eight,” or “I can't walk to my mailbox anymore.”
7. Medication: Make sure your medication list is up-to-date and includes any nutritional supplements or herbal remedies you’re taking, as they can interact and affect symptoms just as prescription medications can. Also, if you’re not adhering to medications as prescribed, your doctor needs to know. For some, this can be difficult to admit, but your healthcare success depends on full disclosure.
8. Other Factors: Be honest about any recreational drug use or alcohol abuse that may be affecting your health. Though you might be reluctant to mention these things, it is in your best interest to tell your doctor about them. Let your doctor know when you’re uncomfortable with a certain topic but that you really want to share so you can get help.
9. Persistence: If you don’t feel as though you’re being heard, or not taken seriously, persist in explaining what you’re experiencing and why you need relief. You’re the expert on your MS and only you can describe the effect your symptoms have on your life.