Choosing the Right MS Doctor
I regularly receive inquiries from newly diagnosed patients asking for recommendations on "the best MS doctor". Often, the request comes in the form of the question, "Can please you tell who is the best MS neurologist in the world?" I'm afraid my answer often disappoints those reaching out to me, because the truth of the matter is that there is not any one doctor out there who can claim the title of "World's Best MS Neurologist".
Certainly, competency levels can vary from physician to physician, and it's important to choose a doctor who knows what they're doing (and there are some who don't). That said, all MS neurologists draw from a standard body of knowledge, the sum total of all of the MS research that's been done up to this point. MS is an incredibly complex disease, and despite decades of research, there is little real understanding of the mechanisms underlying the MS disease process. There are theories, but little in the way of proven fact.
Since so much about MS remains unknown, a good physician will be open-minded, and not be locked into traditional medical dogma. Recent research has overturned many long-held assumptions about MS, and much has yet to be discovered. A closed minded physician who dismisses new ideas out of hand should be of no use to you, but you do want a doctor who maintains a healthy skepticism of all of the "theories du jour" that tend to whip around the Internet. Your doctor should be willing to listen, but also willing to cogently explain the reasons behind the skepticism that, as an educated patient, you will almost undoubtedly run into.
Unfortunately, there is no MS Wizard out there, who carries within his brain unique knowledge and a secret formula for defeating MS. There are many brilliant doctors practicing MS neurology, but they all have access to the same bag of tools, which includes the same diagnostic tests and the same menu of approved MS treatments. Some are more aggressive than others, and some more willing to try "off label" treatments, none of which at this point has proven to be a miraculous elixir. It's important to choose a doctor whose level of aggressiveness matches your own. All doctors have their hands tied by health insurance companies, which routinely reject requests to pay for experimental treatments because they haven't been approved by the FDA specifically for Multiple Sclerosis.
I've personally been examined by some of the top MS neurologists in the United States, veritable celebrities in the field, almost all of whom I've found to be deeply intelligent, intensely thoughtful, and very compassionate human beings, in addition to being terrific clinicians and researchers. None of them has been able to solve the riddle of my disease, or been able to suggest treatments that the others hadn't already mentioned. Currently, there are only a limited number of treatment options out there, and for those of us with progressive disease, those choices are even fewer. The best of the best physicians try to think outside the box, but even there, answers are hard to come by.
When choosing a doctor, it's very important that MS patients see an MS specialist. The disease is too complex, and the research being done too dynamic, to leave oneself in the hands of a general neurologist. All of the top MS physicians I've seen are passionate about their work, nearly to the point of obsession. These are doctors who have never cured any of their patients. They've been able to help alleviate some of their patients’ symptoms and suffering, but none have ever been able to declare a patient free of disease. I imagine this is what drives the frustration that I've seen in the eyes of the best of these doctors.
Obviously, competency is a primary factor in choosing a doctor. Equally important, though, is finding a physician who makes you feel both confident with your treatment choices, and comfortable with the doctor themselves as a human being. They don't need to be your best friend, but neither should they be holier than thou jackasses. When choosing an MS neurologist, you are choosing someone with whom you'll be maintaining a vital long-term relationship. MS is a chronic illness, and until that momentous day that a cure is found (don't hold your breath), MS patients will be dealing with their disease, and their MS specialists, for the rest of their lives. Your MS doctor must be someone you can trust and rely on, and who accepts you as a partner in your fight against the disease.
Big egos are par for the course with top doctors, it's part of what drives them to be top doctors. But your relationship with your physician must be a conversation, not a lecture. As a patient with MS, it's your obligation to educate yourself about the disease to the very best of your ability, and to take an active role in the ongoing treatment of your illness. The doctor patient relationship should be one of mentor and student, not that of master and serf.
Also of great importance is the efficiency and demeanor of the staff of your doctor’s office. Most of the phone calls you make to your MS clinic will not be handled directly by your physician, but by his administrative staff, nurses, and associate physicians. Nothing is more maddening and frustrating than an unreturned phone call when you develop a troubling new symptom, need a prescription refill, or otherwise have a question regarding your condition. Such delays are rude and dangerous, and should simply not be tolerated. Certainly, in a busy neurologist's office, messages can sometimes fall through the cracks, but a repeated pattern of such behavior is reason enough to change doctors. Remember, your doctor and his staff work for you, not the other way around.
Choosing the right doctor is vitally important, but the quest to find "the best MS doctor in the world" is, sadly, a fool’s errand. I know this from first-hand experience. If you are dissatisfied with the level of treatment you are getting, then by all means seek out a new doctor. If you are uncomfortable with your diagnosis, you owe it to yourself to seek out a second, and even a third, opinion. Dispense with any notions, though, that you will find some magical MS alchemist, who will somehow conjure up a cure for you.
Keep in mind, too, that even the best medical schools can turn out less than stellar doctors. Remember, you are not choosing a fancy degree hanging on a wall, but a human being with whom you will likely be spending many years, not to mention many dollars. Choose well...
This article was originally published on Marc’s website on 10/17/09 and is being featured on MultipleSclerosis.net with his permission.
How well do people around you understand MS?