Because your relationship with your multiple sclerosis (MS) doctor will be a long and personal one (you may be discussing oh-so-comfortable subjects like leaky bladders and flagging sex lives), finding someone you feel comfortable with is important. Comfort means different things to different people, but following are some key elements are trust, good communication, and mutual respect.
MS specialists: Training and expertise
Keep in mind that not all neurologists are the same. Most general neurologists see patients with a variety of conditions, including stroke, Parkinson’s disease, epilepsy, migraines, and perhaps MS. In other words, throughout his or her career, a neurologist may have seen many patients with MS, or very few. So, the fact that a physician is a board-certified neurologist doesn’t guarantee any particular expertise in the treatment of MS.
If you have the luxury of choosing among neurologists in your healthcare plan and in your geographic area, it’s important to ask about each neurologist’s experience and training in MS. As a starting point, you can contact the National MS Society at (800) 344-4867 (800-FIGHT-MS) for a list of neurologists with MS expertise in your area. You can also ask your insurance company if your plan includes any MS specialists.
If you don’t have the luxury of choosing among a number of neurologists, you may want to create a tag team — a local doctor who handles your routine care and an MS expert with whom you and your doctor confer periodically. The specialist, who’s likely to be more up-to-date on the latest treatments and symptom management strategies, can provide recommendations for you and your own doctor to follow.
You may need to travel or pay out-of-pocket to go to a specialist, but the peace of mind you get knowing that you’re receiving the best care and guidance possible is well worth it.
If your current doctor says that nothing can be done for your MS, you’re putting your care in the wrong person’s hands. So, search out the specialists in your area through your insurance company or the National MS Society.
MS specialists: Bedside manner
You know yourself best, so be honest with yourself and decide what qualities are most important to you in a doctor. For some people, warm and fuzzy is the key qualification — if they don’t feel comfortable and cozy in the doctor’s office, they don’t want to be there no matter how knowledgeable the doc is. For others, MS expertise trumps everything else, even if the doctor has the charm of a toad.
Most people try to find some combination of both. Whether the neurologist is chilly or charming, you probably need to find someone whose personal style meshes well with your own.
MS specialists: Accessibility and convenience
In addition to knowledge and personality, it’s important to consider how accessible the doctor is — in person or by telephone:
Access to the office: Find out how accessible the neurologist’s office is. Even if you aren’t having any mobility problems at the moment, some time down the road, particularly during a relapse, you may need to see a physician whose office is easy to get to and easy to get into.
It’s amazing how many doctors’ offices aren’t accessible to people in wheelchairs or scooters. Check out the accessibility ahead of time — nothing is more frustrating than making your way to a doctor’s office only to find that you have to park six blocks away and you can’t maneuver your wheelchair over the curb or into the exam room or the bathroom.
Communication: Find out whether the doctor is available for phone calls. Most neurologists don’t take calls during office hours, but you should be able to leave a message and get a return call from the doctor or nurse within a day or two.
Having this kind of communication with your doctor’s office is important because questions about symptoms and medication side effects are common. So ask what the usual turnaround time is for call-backs and what time of day the office is likely to call.
You’ll find it comforting to know that you can count on hearing from the doctor or nurse when you have a question or concern. And check out how long it typically takes to schedule an appointment when and if you develop new symptoms.
MS specialists: Ability to deal with the tough stuff
Having a doctor who doesn’t shy away from difficult topics and who works comfortably with other clinicians is important. You need a doc who is:
Prepared to help you understand what the disease is and how it’s likely to impact your life: You need to be able to talk with your MS physician about the treatment and lifestyle decisions you’re trying to make with the expectation that he or she will take the time to respond honestly and thoughtfully. Your decisions need to be based on the best information your doctor can give you about your disease course.
If your neurologist doesn’t seem willing or comfortable having these kinds of conversations with you, it’s probably time to look for another doctor.
Don’t stick with someone who’s a bit too glib with false assurances that you have nothing to worry about. Many doctors, particularly those without much experience in MS, find it difficult to deliver painful news. They’re quick to reassure people that their disease is mild or that their prognosis is good, without taking the time to explain how unpredictable the disease can be.
When doctors aren’t realistic, their patients can feel betrayed if the disease worsens down the road. So, look for a doctor you can trust to be forthright and realistic with you about your MS.
Comfortable with teamwork: Try to determine whether your doctor knows when to call in the troops. The most experienced MS physicians know that MS care involves a lot of teamwork. They recognize the valuable contributions made by other healthcare professionals to MS care. Some doctors work in MS centers where the other disciplines, such as nursing, rehabilitation, social work, and psychology, are available at a single site. Others collaborate with specialists around the community.
The important point is that your doctors see themselves as working collaboratively in an interdisciplinary framework that ensures you the kind of care you need. The doctor who feels that he or she is the only provider you need to handle your MS care is probably not your best bet.