How to Prepare for an Appointment with Your MS Neurologist

You have not seen your neuro for 6 months. In that time, you have had many moments where you said to yourself, “I should ask my doc about this weird twitch/possible side effect/thoughts on switching to new drugs when they become available” or any other number of things that would be a topic to discuss with the person who works with you to figure out medical mysteries and writes your prescriptions. The day of your appointment rolls around and your doctor walks in the door, smiling and asking how you are. You are staring at the folder in his hands, which contains the results of your routine MRI. That is all you can focus on, so you say, “fine,” searching his face for clues as to whether you actually are fine or not. 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 besides the fact that your feet still tingle and your injection was uncomfortable last night. You leave the appointment feeling slightly relieved by your MRI results, but frustrated because you know that there were many questions that you did not ask.

Any of that sound familiar?

A weird phenomenon happens when many of us go to see our doctors – we seem to have the idea that they are going to take over and figure everything out for us, based on a scan and the snapshot of our symptoms that they see during the short time that we are in their exam room. This happens to the same people that look up menus online before deciding which restaurant to go to for dinner or read (and compare) book reviews before checking anything out of the library. Regardless of why we may have gone to our neurologist unprepared in the past, 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’s 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), and it just 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 How to Talk to Your Doctor About Pain (or Anything Else) 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 that “there is no such thing as a stupid question.” While I don’t believe that is true in every situation, I believe that 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 notetaking. 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 to contribute to the discussion. (See Ask Your Friends About Multiple Sclerosis Symptoms for more ideas about this.)

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. While it may take an extra 30 seconds or so, your doc will probably be thrilled that you are listening so intently and want to understand what is being said. Really.

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 “psyched up” for your appointments. Tell yourself that this is your chance to really do something for your health. Remind yourself that even if your neuro 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.

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