How to Prepare for an Appointment with Your MS Neurologist

How Planning Ahead Can Make a Difference in Your Visit and Your Health

A doctor meets with a patient.
A doctor meets with a patient. Dan Dalton/Getty Images

Picture this: It's been six months since your last neurologist appointment. Within that time, there have been many moments where you thought, “I should ask my doctor about this weird twitch/possible side effect/thoughts on switching to this new drug when it comes out.”

But on the day of your appointment, your doctor walks in the door with the results of your routine MRI and suddenly all of those questions fly out of your head.

You are staring at the folder in his hands, and searching his face for clues as to whether it's good or bad news. Even after he reassures you that the scans look good and specifically asks you about symptoms or medication concerns, you simply cannot remember much of anything. You leave the appointment feeling slightly relieved by your MRI results, but frustrated because you know that there were many questions you did not ask. Any of that sound familiar?

What Can Happen During Your Doctor Visit

A weird phenomenon happens when many of us go to see our doctors: We get nervous or distracted and forget to mention important details about our symptoms, even if those symptoms have been weighing on our minds. Whether we're anxious about test results, stressed by getting to the office, or intimidated by doctors, we can miss precious opportunities to troubleshoot our care for any number of reasons. Or worse, we might assume that our doctors are going to take the lead during our appointment and tell us everything we need to know, based merely on a scan and the snapshot of our symptoms that they see for 15 minutes.

Don't leave your healthcare up to chance. To be an empowered multiple sclerosis patient, taking the lead during appointments is an absolute must. It is important that we get more strategic about our health and help our docs help us.

How to Prepare for Your Appointment

Treat your doctor appointments like important business meetings – prepare for them.

You probably would have a list of questions ready before going to see any other professionals (an accountant, a lawyer, a realtor). Likewise, it makes sense to get your thoughts and questions organized before seeing your doctor. Don’t think that you are overstepping your boundaries — it is respectful to come prepared to an appointment. Make a pledge to yourself to do this before every doctor’s appointment. Here are some suggestions for getting prepared:

Step 1: Update your doctor. Write out a few bullet points that summarize how you feel and what is happening. (See 9 Things to Know Before Describing Pain to Your Doctor to make sure that you include relevant information about how your MS symptoms are affecting you.) Be short and to the point, but don’t leave out anything that might be important. Be sure to include any lifestyle adjustments you are making, including changes in diet, exercise, and supplements. Also let your doctor know about any alternative providers you are seeing, such as acupuncturists, chiropractors, and massage therapists.

Step 2: Decide what you want to improve. Make a list of anything about your health that you want to improve. You may be surprised what can happen if you just ask. For example, if you let your doctor know that you are having trouble sleeping, he or she may simply change the time of day you take a medication, which may make a big difference. Mention what you would like to improve and see if your doctor can help.

Step 3: List any additional questions. You may have heard the adage, “there is no such thing as a stupid question.” While that may not be true in every situation, there is no question about your health that you should be afraid to ask your doctor. They can range from the insignificant-to-most-people-but-a-big-deal-to-me (i.e., Does it mean that my brain atrophy is picking up speed if I couldn’t finish the crossword puzzle in the Sunday New York Times?) to the improbable, but still of concern (i.e., Will laser hair removal treatments cause a relapse?).

Even if there is something happening that is potentially embarrassing, remember that your doctor has seen and heard everything you could possibly say (and probably much weirder and much worse). List all of your questions, including possible follow-ups.

Step 4: Figure out logistics for note-taking. Ideally, you would have someone come along with you to appointments. This person can not only take notes, he or she can also remind you of questions and give you the courage or support that you need to ask the question and any clarification that you might need. Also, if this person is a family member, they may have very important details about you to contribute to the discussion.

If you will be going to your appointment alone, make sure that you bring a pen and paper. Do not hesitate to ask the doctor to repeat important information or spell words that you don't understand. It may take an extra 30 seconds or so, but it's important that you get it right. It matters little whether the doctor is happy to answer the question or seems annoyed. Your health is paramount.

Step 5: Give yourself a pep talk. Whether you have “white coat syndrome,” meaning that you are scared of doctors and what they might tell you or do to you, or you feel completely comfortable with your doc, get yourself excited for your appointments. Tell yourself that this is your chance to really do something for your health. Remind yourself that even if your neurologist is a medical genius, he or she cannot read your mind or see what is happening with your symptoms outside of his office unless you tell him or her.

Know that most docs prefer the kind of patient that gets involved in their own healthcare and tries to help figure out mysteries or solve problems.

Now you are ready for your appointment. Of course, there may be other things that you want to bring along to ask about, such as research that you have done on the Internet or information about a possible clinical trial. Make sure that you prioritize your questions or concerns, so that the most important things get addressed in case time runs out. Going in to the appointment armed with questions and information can make seeing the doctor something you look forward to, rather than something you dread or fear. Try it and see for yourself.

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