The Challenge of Finding a Good Doctor – Part 1| MS BLOG

Get ready for another two parter! 

Today’s blog will focus on finding the right neurologist and Part 2 will address the challenge of dealing with any other doctor for general purposes, such as your primary care physician, or the doctor in Urgent Care.

As a patient advocate for thirteen years already, there is one thing that consistently surprises me.  People are assigned a neurologist after a diagnosis and stick with that neurologist, even if they are unhappy with the doctor.  WHY?!  It seems that somewhere in our medical system the line between customer and provider has gotten crossed.  Who is the employee and who is the employer?  Oh and while we’re on the topic, who’s body is it?

doctor/patient relationshipIf you are the patient, you are the employer!

You pay the doctor, or, you pay the insurance company who pays the doctor.  If you hired a cleaning lady and asked her on a particular day to just clean the kitchen and instead she only cleaned the bathrooms, would you ever have her back again?  I doubt you would want to hire her again.  Why hire someone who does not meet your needs as a patient?

Although I believe that you should have more say in the doctor-patient relationship, there is no question that the neurologist still remains the professional.  In most cases they have much more and in some ways, more authority.  But just because a neurologist is a type of professional, does not mean you have to forget all your rights!

I know that having MS is exhausting enough.  Let’s be honest, managing this illness is a full time job.  The thought of going “doctor shopping” is the last thing you want to add to your plate right after a diagnosis.  But that’s precisely what you have to do – you need to shop around for doctors.  There are neurologists who are absolute geniuses and who are well regarded in the world of MS research.  That doesn’t mean they are a good doctor or the right doctor for you.  OK let’s slow down, we’re talking about two different things now, and I want you to be aware of both.

Good doctor: 

In my opinion a good doctor attends to patients needs.  Listens empathically and works with the patient to come up with the best treatment plan.  This doctor also educates the patient and/or encourages the patient to educate him/herself by providing resources.

RIGHT doctor: MS patient

This doctor has all the qualities of the good doctor.  Additionally, his or her personality meshes well with yours.  You find a mutual respect with the right doctor, you feel heard, you feel safe, & you truly feel like a team.

There are many good neurologists out there that may not be the right doctor for you.  My right doctor might not be a good fit for someone else because of their personalities., so you really do need to shop around.  This is challenging for many reasons.

  1. Fatigue from MS.  I highly recommend bringing someone with you to every doctor appointment so that they can do the driving and deal with the parking nightmare.  Someone you trust and who you can talk about difficult issues in front of.  Someone who has your best interest in mind and who can take notes while you are with the doctor.  Just focus on the doctor, don’t distract yourself with having to write things down too, someone else needs to be there to do that job.
  2. Insurance!  Yes insurance can be a limiting factor when searching for neurologists.  Request a list of neurologists within the mileage limit you prefer from your home.  Remember, we don’t see neurologists that often other than during an exacerbation.  So it might be worth a long drive once every three or six months.  With that list, call up the National MS Society and see what they can offer you in terms of a list of MS Specialists in the area.  (Yes, you need to be seeing an MS Specialist!)  Then see which doctors overlap.  Try to get in to see them and feel free to let them know you’re trying them out to see how well you match.
  3. Finances.  You might find the right doctor for you but might not be able to afford the $600 fee.  First of all, discuss this with the doctor.  Sometimes they are willing to work with you on their fee.  I had several doctors in college who were willing to write off whatever I wasn’t able to pay.  Secondly, ask this right doctor if he or she would be willing to work with a different neurologist that you can afford.  What you can do is find a good neurologist who will consult with who you felt is the right neurologist.  I can’t guarantee this will absolutely work and that both doctors will go for it but many will be open to it.
  4. Not knowing what to ask or what to look for.  The solution here is to educate yourself.  Read patient message boards on for example.  Learn as much as you can about your illness and about all treatment options so that you can feel involved during the doctor visit which will then help you assess whether or not your rapport with the doctor feels right to you.

Here is an example of how I had to work around some of these issues for a two year period.  I had two great doctors at USC (Dr. Leslie Weiner & Dr. Lilyana Amezcua) but no longer had insurance to cover them.  I had my right doctor at Kaiser, Dr. Andrea Goldberg.  Whenever the two of us felt iffy on something, we checked back with the great doctors at USC to get some more input (even though I trusted Dr. Goldberg’s knowledge of MS and of me inherently, sometimes we could get another perspective).  I had great rapport with all three doctors but the rapport I have with Dr. Goldberg is something I don’t think I will find with someone else since we have been working together since I was 14 or 15 years old!  Anyway, I discussed this set up with all three neurologists in advance, and all three agreed to it.  Today my good doctor is at Cedars Sinai and I know I can touch base with my right doctor if I need to.

ms neurologistLook, no doctor will be perfect.  But if you don’t feel like you can bring up questions or concerns, something is wrong.  If you don’t feel comfortable and safe around your doctor, we have a problem.

You need someone you can trust with your body!

It’s hard enough managing this illness, you want to make sure to only put All Stars on your team! 

Happy Shopping!

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