Upon being diagnosed with Multiple Sclerosis (MS) one of the last things on your mind is probably, “I need to do some research and find a really good doctor to head my healthcare team to help make the best health-related decisions for me”. But that really is one of the most important things to tackle as soon as you can! I can’t even imagine (nor do I really want to) where my health would be today if I had been able to start off with my current neurologist instead of the many I went through over the years leading up to me finding him. Even people who have had MS much longer than I have often ask me, “How do I find a good neurologist? I am really unhappy with mine, what do I do?” Finding a good neurologist is very important because the decisions he or she makes will directly affect your health, which affects your entire life! So what is my advice regarding how to find a good neurologist?
First things first
My answer is simple but not necessarily easy. First thing’s first; you need to be able to get along well and communicate efficiently. Considering you may be stuck with this chronic disease for life you will probably be seeing this neurologist for many years and your visits should be a positive experience rather than one that leaves you angry, frustrated or unsatisfied. Chances are your initial neurologist is someone who is simply part of your insurance network that your local medical office’s appointment scheduler set you up with. I have actually gotten into very loud arguments with some of my first neurologists and have even walked out of the office on a few and I have heard similar stories so I know it happens! In these cases, what I did and what I recommend is to first call/see the appointment scheduler and let them know you would like to see a different neurologist. In some cases they will just schedule an appointment but sometimes they require a referral but all you have to do is tell them (or whoever they say you need a referral from) that you want a second opinion. Plain and simple. Second opinion. Third opinion. Fourth. I don’t even know how many I have had when looking for a decent neurologist!
Do your research
But more than likely that will just be a temporary “quick-fix”. So after that appointment is set up you should start doing some research. I hit the internet and searched for “MS Specialist” in my area and then started reading up on them. This easily provided me with their degrees, where they went to school, how much experience they had, whether or not they had written papers or participated in studies about MS and simply patient reviews (there are many websites where patients can rate their doctors). Also, this usually helped me determine if they were actually an “MS specialist” or not, by which I mean, are they really involved in the latest MS research regarding how to best treat MS or are they simply trying to see more patients in a specific niche. Career choice or passion? Once I had a list of possible neurologists I started making calls to see if they were accepting new patients and if they accepted my insurance.
Word of mouth matters
This greatly improved my experience with neurologists but still, I was not satisfied with the care I was receiving. So the next thing I did (and the first thing I would recommend you do if you are online) is to talk to other people with MS in your area to find out who they are seeing and who they have already seen and disliked for one reason or another. They say word of mouth is the best form of advertisement and I could not agree more. I learned a lot from people on Facebook with MS regarding who to see and who not to see but I ended up following a lead that was presented to my Dad from someone at work. They loved this guy and when I looked him up I quickly saw why. He was very involved in MS research, had published many abstracts about treating MS and spoke about the disease at least once a month! I was so excited to see him and once I did I immediately knew why the wait time to get an appointment with him was so long! He is a brilliant doctor and at the same time he seems like just “one of the guys” at the gym! The fact that people would fly in from other states to see him told me a lot too! What is funny is that I have seen so many “MS specialist” who knew so much less about MS than I do but this guy? He knows so much more about this disease than I will ever know in my life yet he does not even really consider himself to be an MS specialist! I have never asked him a question that he did not have a solid answer to and that was not backed up by evidence or sources.
Putting in the extra effort for a good doctor is worth it
A few years later I moved to Colorado where I had to start the search for a new neurologist. I had to go through all the nonsense of horrible neurologists again and my health started to fall apart so after a year or so I ended up moving back to California so I could resume seeing my current neurologist. I loved it in Colorado and hate it here in California but I trust this guy with my health so much that it was worth it. Once I am able to move back out of state I will make sure to have a savings account set up just for being able to fly back and see him once or twice a year. Hey look at that, now I am already planning on being one of those people who fly in from out of state to see him! I get it now! I really do believe that everyone with MS should have a neurologist that they love and trust this much! For people with a neurological chronic disease like MS, their healthcare team is a vital part of their life so I can’t overstate how “worth it” it is to put this kind of time and effort into finding a good neurologist!