Multiple Sclerosis: Establish a Pattern of Routine Care - dummies

Multiple Sclerosis: Establish a Pattern of Routine Care

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

After a multiple sclerosis (MS) diagnosis has been confirmed, and you and your neurologist have decided on a course of treatment, the next step is to establish a pattern for your routine care. Most MS specialists like to see their patients about twice a year — more often if the MS has been active, and less often if things are pretty quiet or the patient is being monitored by a local neurologist closer to home.

The purpose of these visits is to monitor disease progression and make sure that symptoms are being adequately managed. During these visits, the neurologist performs a neurologic exam to pick up on important information about your MS that you may not be aware of. Increasingly, MS specialists are also recommending periodic magnetic resonance imaging (MRI) scans to help guide their treatment recommendations.

If your doctor indicates that there’s no need to see you on a regular basis, or simply leaves it up to you call if there’s a problem, he or she isn’t monitoring your MS closely enough.

Your neurologist’s job is to help you be as healthy as you can be, but don’t forget that you have an equally important role to play. The best docs often say that they’re only as good as the information they get from their patients.

Here are some tips for making your doctor visits count:

  • Send your medical record beforehand (the ideal option) or bring them to your first visit. Any time you’re seeing a neurologist for the first time, providing as much of your medical history as possible, including MRI films, test results, and records from your previous doctors, is important.

  • Be on time. Everyone gets frustrated when forced to wait hours on end in a doctor’s office, but the fact is that people arriving late for appointments is one reason that doctors fall behind. They’re also trying to give each patient the attention he or she needs, and one day it may be your appointment that runs over the scheduled time.

  • Keep track of your symptoms. There’s no need to make a career out of this, but brief notes on your calendar about your latest ups and downs can help you remember problems or changes that you want to mention during your office visit.

  • If you have a lot of stuff going on with your MS, prioritize the problems. Chances are that your doctor won’t be able to tackle every symptom at every appointment. So, if your bladder problems are making you crazy, don’t wait until the last minute of your visit to mention them.

  • Come prepared with a list of your questions. Most regular visits last from 15 to 20 minutes — time that’s usually taken up with the neurologic exam and a review of your symptoms, medications, and any side effects you’re having. Having your questions ready can help you and your doctor make the best use of your time together.

    If you need discuss a complex issue, such as sexual or cognitive issues or anything else that may take a lot of time, you may want to schedule an extra appointment or phone call so that neither you nor the doctor feels rushed.

  • Make sure to keep your doctor informed about all medications (over-the-counter as well as prescription, including their dosages) you’re using for your MS or other conditions. In fact, keeping a complete list in your wallet for easy reference is a good idea. (And while you’re at it, keep a list of your allergies as well.)

    Keeping your doctor informed is important because over-the-counter products can contain ingredients that interact with your prescription drugs, worsen symptoms, and affect your immune system in negative ways. And any of the medications you take may have side effects that individually or collectively make your MS symptoms worse.

  • Don’t expect your neurologist to have time to review a fistful of articles you’ve printed from the Internet. But, if you see something of particular interest or concern, asking about it is reasonable. Most doctors are happy to take a look and offer an opinion.

    You can also call the National MS Society for this kind of information. The Society’s MS Navigators are trained to help you find the information and resources you need. You can call (800) 344-4867 (800-FIGHT-MS) or e-mail them with your questions.

  • Be honest with your doctor. Some people try very hard to be a “good patient” or impress their doctor with how well they’re doing. If you try to look your best for the doctor or minimize your symptoms or concerns, your doctor may not recognize the things that are truly bothering you.

  • Don’t hold back — speak up when you’re worried. The doctor can’t read your mind any more than anyone else can, so don’t hesitate to talk to your doctor about your symptoms, medication side effects, or problems with daily activities.

  • Bring an extra pair of ears (or a tape recorder). Most people aren’t all that relaxed when they’re in a doctor’s office. You may be so focused on what your next question is going to be that you forget to listen to what the doctor is saying. You may be so worried about what the doctor is going to say that you don’t remember the answer all that accurately. Or, you may have some memory issues that make it difficult to remember what the doctor says.

    To head off any forgetfulness or worry, you may want to bring a tape recorder to the appointment so that you can listen to it again later. Some people also like bringing a relative or friend along to listen. If neither of these options is possible for you, ask your neurologist to write down the key points, particularly relating to medications or other treatment issues.