A fast scan through the many public MS bulletin boards on the web will quickly reveal that many patients are not only struggling with their MS symptoms, but also with the subpar treatment they're getting from their neurologists. It's absolutely shocking to read report after report of patient's complaints about their treating physicians, with problems ranging from simple inattentiveness on the part of their doctors or the doctor's staff, to instances of stunning incompetence.
Of course, folks who are happy with their neurologists aren't as likely to post publicly about their positive experiences as are patients that are disgruntled with the treatment they're getting. It's simply human nature that the angry and dismayed are much more likely to report on their experiences than those more satisfied. Still, though, it does appear that too many patients are left groping for both understanding and proper treatment by the physicians in whom they've entrusted their care.
My own experiences illustrate the wide range of competence among physicians.
The first doctor I visited specifically about my MS symptoms was a general neurologist who quickly dismissed me as some kind of nut. Dr. Imbecile, as I like to remember her, simply disregarded the MRIs that revealed demyelinated lesions in my brain and spine, and my progressively worsening symptoms. She told me to up my dose of antidepressants, and grudgingly wrote me a prescription for physical therapy. Even after the physical therapist noted marked weakness on my right side, Dr. Imbecile stuck to her grossly incompetent guns.
After several months of this idiocy, I landed an appointment with one of the top MS neurologists in New York City. Upon hearing my tales of Dr. Imbecile, he rolled his eyes and shook his head in disgust. He ordered a new set of MRIs just to confirm his suspicions, and within a week gave me a diagnosis of MS.
This new doctor, Dr. Waytoobusy, was not without his problems though. He was clearly a brilliant researcher and clinician, but he and his clinic were obviously overburdened. It seemed that every time I visited his office, he was seeing about half a dozen patients simultaneously, popping into each examination room for about five minutes, and then leaving to visit with the next patient. He'd make the rounds like this several times, so I'd wind up seeing him for about 20 minutes, split up into five minute chunks.
Being newly diagnosed, I had thousands of questions, not to mention fears, and it was quite disconcerting to have my doctor literally backing out of the room as I scrambled to ask him questions and gain some insight into my disease. When he suggested I go on a disease modifying drug, he unceremoniously gave me four videos to take home with me, so that I could watch them and decide which drug to take. As if I wasn't already confused enough, without having to watch marketing videos put out by the big pharmaceutical companies...
I stuck with this neuro for about a year, and then finally found the neurologist I've been with since 2004, who I affectionately call Dr. Big Brain. I could just as well call him Dr. Big Heart, for he shows true compassion for his patients My first visit with him lasted over two hours, and was followed up two weeks later with another 90 minute visit. Dr. Big Brain is known to be very aggressive in treating MS, and is something of a maverick, but so am I, so things worked out nicely.
Unfortunately, I have a very atypical case of PPMS, which has proven time and time again to be extremely difficult to treat, and despite Dr. Big Brain's best efforts, my symptoms continue to worsen. I'm comfortable, though, that this worsening cannot be attributed to my doctor's lack of attention, or limited medical talents. He might not be the right physician for every MS patient, as some are more cautious than l and want to take things slowly. And certainly, my experiences with him haven't been perfect, as we've chased many blind alleys, there have been a few mistakes, and, well, I'm still getting worse. But any negatives I've experienced with him have been caused by Dr. Big Brain's eagerness to see me get better, not due to a lack of attention or my getting lost in a tremendous patient load.
It's very important that patients with chronic illnesses find doctors that they can be comfortable with for the long haul, because the doctor patient relationship in diseases like multiple sclerosis often lasts for years, and even decades.
There's an interesting website that a friend of mine runs, called MS Neuro Ratings. It's been set up to allow MS patients to leave reviews, both good and bad, about MS doctors they've had experiences with. Although it currently has posts reviewing only a small fraction of the MS neurologist population, the more MS people that post, the more complete the listings will become.
I'm convinced this site could act as an invaluable resource for patients both newly diagnosed and well into their disease course. Give it a look, and if you're so inclined, leave a post about the neuros you've encountered. You'd be doing a tremendous service to your fellow MS patients if you do.