Wednesday, March 18, 2009

Neurologist Roulette

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.


  1. Thanks for this particular post. My most difficult character flaw is not being aggressive with my MS doctor. I have PPMS and it seems as if I have no clue as to where to go to find out about what is the latest tests ongoing that I can take a part in. Do they only happen in certain cities?

  2. Anonymous: sometimes it's very hard to assert yourself with a Dr. They are in control the situation, with their white coats and medical insurance, while you're very often sitting there in your underwear. Not the most advantageous position to be in.

    As for clinical trials, unfortunately there really aren't many conducted for PPMS. Those that are usually conducted in the bigger cities. You can check for all of the listings.

    Also, you can urge your neuro to use some of the drugs intended for RRMS to try to combat your PPMS. Rituxan does seem to be effective for a subgroup of patients, and my point of view is trying something is better than doing nothing...

  3. I was fortunate enough to find Dr. Big Brain/Heart from the start. He correctly diagonsed me with PPMS from the beginning, and predicted my progression quite accurately. I seem to have a very similar course of PPMS as you do Marc. In fact my first DMD was Novantrone- now that is aggressive given that all I had was a little hitch in my step back then. We tried a half dozen other drugs, including Rituxan, and have two or three more ideas in the queue. I've been lucky to have a neuro who shares my risk tolerance, although, alas, I'm still progressing.


  4. I have discovered that there are a lot of Dr. Waytoobusys when it comes to MS specialists. There are too few neurologists interested in treating the thousands of patients with chronic progressive diseases. Now headaches --that is where you make the money. I was told my city has a dearth of neurologists specializing in MS. Too many people suffering with the disease and not enough specialists. When my doctor was in medical school all of her neurology co-residents asked her why on earth she would want to specialize in MS when it was so depressing and there was no cure. Now that statement is pretty depressing too.

  5. anillo: you know, I've often had the same thought about MS neurologists, that it must be very strange to be a doctor who never cures their patients. I have met some very brilliant, very dedicated people who have devoted their lives to trying to stamp out this disease, so we should be thankful for that. I only wish they'd have more success...

  6. I can definitely relate to the first anonymous' post. But at least he/she has an MS doctor. The diagnosing doctor in my case was simply a neurologist. It was my understanding at the time of my diagnosis that unless you see an MS specialist, the neurologist is there to make a diagnosis... that's it. During the ten years since my PPMS diagnosis, my annual visits consist of MRI's, a brief mobility exam and answers to his list of questions. I am managing my symptoms with three commonly prescribed meds for MS. It has been my decision to reject the high-tech injectables, ABCs, etc., since the expense and inconvenience of doing so outweighs any therapeutic effectiveness for PPMS. Before closing, thanks again Kami ((may I call you Kami?) for all the delightful and informative posts. (centenniel, my log-in name)

  7. Centennial: you can call me anything you want to, except Gertrude...

  8. Thank you for your insights.