Fatigue, pain, numbness, weakness: The symptoms of multiple sclerosis (MS) can feel overwhelming. And, because they tend to vary in severity and change over time, it can be difficult to express how you’ve been feeling when it’s time to meet with your doctor.
But communicating as clearly as you can about your symptoms is critical to making the most of your appointment. “[Doctors] are only as good as the information we get,” says Barbara Giesser, MD, a neurologist and MS specialist at Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, California. “So, the more detailed and specific you can be, the more we’ll be able to help you.”
When talking to your doctor about MS, be as open, honest, and descriptive as possible.Getty Images
What to Do (and Avoid) When Describing Your MS Symptoms
The first rule of thumb is to be open and descriptive when speaking to your doctor. These strategies can help you communicate more effectively with your MS care team.
Do: Be Honest if You Ever Skip or Miss Doses of Your Medications
You may not want to disappoint your doctor by telling them that you haven’t stuck to your treatment regimen, but it’s very important to share this information. “If you’re not taking your medication — because you have side effects from it, or it’s hard for you to keep up with the schedule, or there’s some other reason — your doctor needs to know that,” says Dr. Giesser.
Not taking your medication consistently can affect your MS symptoms. Let’s say your doctor prescribes disease-modifying therapies to slow the progression of MS. If they notice more scars on your next MRI or that your next neurological exam is worse, your doctor may assume the medication isn’t working if you don’t tell them you haven’t been taking it.
“We don’t judge,” says Giesser. “It’s okay if you haven’t been compliant with your medication, but try to tell us why, so we can help you figure out a way to take your meds regularly.”
Don’t: Stay Silent About Supplements, Alcohol, and Recreational Drugs
Any nonprescription medications and supplements you’re taking may affect how well your prescription MS treatments work. “Some of them can interact with prescription medications, and some of them might even be harmful,” says Giesser.
The same goes for alcohol and recreational drugs, including marijuana. “It’s important to tell your doctor about everything you’re putting into your body,” she notes.
Also, beware of any supplements that claim to ease MS symptoms. Unlike prescription medications, supplements aren’t regulated, which means their effects can be hard to predict. “If you don’t know what something does, it may be potentially risky to take it,” says Giesser. To play it safe, don’t take a supplement without first talking to your doctor about it.
Do: Be Specific About Your Symptoms
If you’ve been feeling more fatigued than usual, don’t say something vague like, “I’m more tired than before.” Instead, be as precise as you can, and say something like, “I now need 10 hours of sleep when I only used to need eight.”
When it comes to describing your pain, try to explain the quality and character of it, so your doctor can treat it better. “For example, if it’s prickly or stabby, it might be a nerve pain. If it’s tight or achy or pulling, it might be spasticity, which is treated differently,” says Giesser. “If it’s worse with movement or in a certain position, it might be a musculoskeletal issue.”
Don’t: Gloss Over How Much Your Symptoms Affect Your Day-to-Day Life
Neurological exams and MRIs (magnetic resonance imaging) aren’t the only measures of how you’re doing. Your doctor also needs to know the impact MS has on your day-to-day life. “If there’s a specific symptom or a problem that’s impacting your ability to do your everyday activities, let your doctor know about that,” says Giesser.
For example, tell your doctor how often you cancel plans, don’t feel up to doing something, or have to force yourself out of bed.
Do: Keep a Log of Your Symptoms and Share It With Your Doctor
It’s a good idea to keep track of your MS symptoms. Mark down whether they are ongoing or new and what makes them better or worse. You can log this in a notebook, computer spreadsheet, or mobile app, such as the Multiple Sclerosis Association of America’s My MS Manager.
Before your next appointment, review your symptoms log and look for any patterns that stand out. Then, you can share your findings with your doctor.
Describing your MS symptoms can be challenging, but it will help your doctor give you the best care they can. “Try to give your doctor as much information as possible,” says Giesser. “An abundance of information never hurts.”
The Takeaway
Your doctor is a crucial member of your multiple sclerosis care team. When it comes to managing your condition, honesty is always the best policy. Keep a log of your symptoms and be specific about what you’re feeling and experiencing. If you occasionally miss a dose of medication, bring that up, too. Your doctor is there to help you, not judge you.
Jessica Baity, MD, is a board-certified neurologist practicing in southern Louisiana. She cares for a variety of patients in all fields of neurology, including epilepsy, headache, dementia, movement disorders, multiple sclerosis, and stroke.
She received a bachelor's degree in international studies and history from the University of Miami and a master's in international relations from American University. She graduated from the Louisiana State University School of Medicine, where she also did her internship in internal medicine and her residency in neurology.
Prior to practicing medicine, she worked in international relations and owned a foreign language instruction and translation company.
Erica Patino is a freelance writer and editor, content strategist, and usability specialist who has worked for a variety of online health outlets, including Healthline, Sharecare, and Twill Care. She was previously a senior editor at Everyday Health. She is also the founder and editor-in-chief of Hear 2 Tell, a website that covers advances in hearing loss treatment. Patino lives in Portland, Oregon, with her husband and twin sons.
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