They can be the most integral part of your healthcare team – and the most difficult to find. Sure, there are plenty of them out there – but if you’re looking for one that is both personable and well-informed, specifically in the treatment of multiple sclerosis, you may be in for a bumpy ride. I hear from people almost daily that are looking for good neurologists. And the horror stories I’ve heard – from being dismissive and rude, to actually prescribing the wrong medication – are enough to make you run screaming into the night!
My first neurologist was very cocky. I appreciate self-assuredness, even a bit of arrogance. But cocky? No thanks. He was far more interested in the doctoring of business than in the business of doctoring. He had discovered that “sleep medicine” paid much better than MS, so he “lost that loving feeling” for all things MS. It made sense – from a business perspective. I counted one time while I waited in the waiting room for 45 to see him. Seventeen people came through his front door, checked in, paid their co-pay (for those outside of the U.S. and lucky enough not to have this aspect of healthcare, this is something we pay each time we go to see any practitioners – typically between $20 and $50), a technician came out and took their CPap machines from them, printed out the readings, handed the CPap back to the patient and sent them on their merry way. That was 17 copays in 45 minutes – and the doctor never set eyes on one of them.
I was called in to the doctor’s office, he had to perform the usual manual neurological tests, ask a ton of questions, look back at my history in my chart, and answer my plethora of questions. There was much explaining, much diagramming and much considering on his part that went into my 1/2 hour appointment with him. And that was just for 1 copay. The ROI (return-on-investment) in that scenario is pretty tough to defend, compared to the ROI for sleep medicine. After all of this time and energy, he suggested I get off the Betaserone injections and get on Ampyra instead. Well, that would have been great – no injections and all – except that Ampyra is for gait and walking difficulties, of which (knocking on wood now), I have none. He hadn’t kept up with the MS literature. He didn’t know the difference between disease modifying drugs and symptom mediating drugs. Thank goodness I did.
So – I guess that’s what it comes down to: we all have to be responsible for our own healthcare to some degree. I could have blindly taken that script and joyfully stopped injecting myself every other night. And then what? Who knows. But, because I’m informed on my disease and the potential medicines available, I was able to avert a potential disaster. We’re more interested than anyone in our own health. We have to watch these folks like a hawk. It’s a shame – when you need to be able to trust the most, you must be most wary.
It’s tough finding a good doc – and there’s both science and artistry to it. And don’t discount personal rapport. Only you can know if you feel comfortable or not. Listen to your gut. Choose wisely. It could mean the difference, quite literally, between walking – or not.
I’m interested in starting a listing by geographic location, of good practitioners. This would include neurologists, but wouldn’t have to be limited to that speciality. I’ll need your help. I don’t want to bash those docs we’ve found to be “less than great,” just give our fellow MS’ers a place to start to look for help. This site is dedicated to offering tips and tricks to living your best life with MS. This seems like a really logical, basic step to help in our community’s awareness and ability to find good healthcare providers.
Please tell me what you think of this idea? Would it be helpful? Would you participate and help me build this list by submitting your recommendation of good practitioners in your area? Your name would not be published.
I’ll be waiting to hear if there’s a need for this sort of listing. I’m counting on your feedback. Please leave me a comment below. Thanks again, for all of your support. FUMS
Special thanks for FreeDigitalPhotos.net for thier kind usage of this photo.