Multiple Sclerosis & Finding A Doctor: 10 Things To Consider

Finding a doctor that you trust, someone that instills a sense of support and validation while imparting knowledge in a way you can understand can be difficult in the best of times.  But finding that special someone while feeling like shit and scared as hell can be overwhelming. I remember back when things first started going wrong; first a dead feeling in my right foot, then tingling up my spine while in the shower, and finally peeing on the playground while my kids ran around with friends, oblivious to my growing panic (Segway Into My Life.) Up until that point in my life my only need for doctors was a few broken bones and bumps & bruises as a child and then when I was in the process of becoming a mom.  Other than that, I had always been healthy and had never given much (if any) thought to the “what if’s,” “what would you do” questions of becoming sick.  Oh to live in that blissful world of ignorance again!


But, I did become sick and at the time I had no idea what was happening, what was wrong with me.  My life long mantra of “it is what it is” allowed me to sweep aside or ignore my growing symptoms far too long, and by the time I finally admitted that there was in fact something major going on within my body, I had become prone to full blown panic-attacks and misled self-diagnosis to the umpteenth degree.  I had a growth in my uterus that was taking over my body (hello MS hug!)  I had a tumor in my brain that was making my body forget how to work and function – It seemed like every day I would come up with some new theory on what was wrong, what was causing my body to NOT be ok.  Given the stress and emotions of all of this, it was even more daunting to think about “who would I want to take care of me?”  “What stranger would be the best for me and the future of my health?”


After a traumatic breakdown at my gynecologist (again with the uterus theory) I was finally guided to see my first neurologist – and met the “Poker Playing” doctor  I have always maintained that I feel extremely fortunate to have been so quickly diagnosed (I have heard many stories of people that go on for years with the “not knowing” and can’t imagine the level of anxiety and stress that would provoke.)  Although this doctor was not an MS specialist, he did have considerable knowledge about the disease, given that his residency as a neurologist was in a geographical area that had a large Multiple Sclerosis population.  I am  extremely thankful to him for his amazing words of wisdom that helped shape even my initial reaction to being diagnosed (Not an “Oh Fuck” moment with MS) But, was he the RIGHT doctor for me?  The one that would be best for me and my new journey into a life living with a chronic disease.


If not, how the hell did I tell him this, break up with him and set out to find the RIGHT one.  In my case, this decision was made easier, by him suggesting that I find an MS specialist – and get a second opinion.  He gave me the names of a few well known ones in our area, and I spent the next few days reading about these folks in on-line profiles and medical sites. But for me, what it came down to was finding someone that I liked, and that liked me.  Someone that I could trust, but also someone that would “get me” and my not always so conventional ways of thinking and doing things.  These are NOT things that you can pick up from just reading a bio or profile.  I am a people person, and need to meet someone to get a sense of who they are and how we would interact.


But, I felt like CRAP.  I was exhausted and even the smallest of tasks could leave me drained and longing to just go home and curl up in bed.  I didn’t have the energy to go on an all out doctor hunt to meet and greet all my choices.  I finally selected one, based on two criteria.  Gender and location.  I am not sure WHY I felt a female doctor would be best, since all of my previous doctors have been male, but that was number one.  Next was that given my fatigue, someone close to home was imperative.  So, I found one, set up and appointment and requested that my test results and medical files be sent over.


On the day of my first appointment with Dr L, I remember being nervous as hell but also a bit optimistic.  Maybe “Poker Player” doc had it all wrong and it wasn’t actually Multiple Sclerosis, and maybe all of this shit would just go away.  Once I was shown into the exam room and had been waiting for a few minutes, there was a light knock on the door and in walked a woman that was another mom at my kid’s school.  Although I didn’t know what she did, I did know that she was NOT a doctor and I wondered what the hell she was doing, standing in my exam room.  I certainly considered her  friend, but not someone that I would invite to accompany me….anywhere, let alone this appointment.  Turns out, she is the medical research director for Dr. L. and although she had heard through the “grapevine” that I had been diagnosed with MS and she had seen my name on the doctor’s schedule, she had not approached me prior to my appointment out of respect for patient confidentiality and not knowing if I was comfortable openly talking about my recent diagnosis.


Having her there, and listening to her ringing endorsement for Dr. L made the appointment and my decision on a new doctor a lot easier, but it also established my relationship with the doctor on a friends level beyond just being another patient of hers.  For ME and my personality, that is EXACTLY what I needed.  As I mentioned before – someone I liked and that liked me too.  The fact that she is a brilliant woman heavily invested in her patients care and highly respected nationally for her work within the MS Research community all made my decision a solid one, but it really boiled down to liking one another.


I was thinking the other day, how my criteria, what I wanted and needed is probably different from other’s with Multiple Sclerosis or any other chronic disease.  Other than asking yourself: What is it I need from a doctor? And acknowledgng other traits or characteristics that are important to you I thought I would offer up some other things that may play a role in choosing the right doctor.


  1. Use the internet to search for doctors in your area., RateMDs, and are good places to start. Google the doctor and hospital or clinic they are affiliated with.  What do other patients have to say about the care and customer service provided?
  2. If you are in a local support group (on-line or in real life) ask other members for recommendations or feedback on a doctor you are considering.
  3. Check with your insurance company to make sure that the doctor is covered within your plan and if referrals and/or preauthorizations are required for things like MRIs, CAT scans, spinal taps, lab work and other services you might require.
  4. Make sure that the doctor is in good standing and is Board Certified (if that is something that is important to you.) is a good place to start.  You may also want to check with the Better Business Bureau (BBB) to determine if their general business practices are up to snuff.
  5. What is the doctor’s schedule? Do they have multiple days that they are in the office seeing patients or do they travel for medical conventions etc a lot?  How easy it to get in to see the doctor? Will you primarily be interacting with the doctor or the support staff? What is their protocol for after-hours/weekend needs?  Do they have an answering service with access to a doctor or nurse on call should you need to reach someone? ****As always, if it is a life threatening emergency CALL 911!****
  6. Does it matter to you whether the doctor is male or female?  Maybe age might be something you want to consider – does a young new doctor (fresh out of school) appeal to you?  Or perhaps you prefer a more mature doctor with more experience?  Where is the doctor located and how convenient is it to your home or work?  Are test and procedures performed on site or is there an affiliated hospital or clinic you need to visit for such things?
  7. Is the way that the doctor explains things easy for you to understand?  Are they open to questions and do they provide sufficient time to discuss current symptoms and possible treatments?
  8. What are the doctor/staff’s primary means of communication?   Do they send out reminders and follow-up information via email?  Does the clinic or hospital maintain a site that provides you access to your medical records, test results and messaging to the doctor and staff?
  9. Do you like the doctor’s and staff “bedside manner?”  Do you feel welcome and that your thoughts and opinions are valued?  Do you feel as if they listen to you when you are trying to explain how you feel or what you are experiencing?
  10. What are their views on CAM (Complimentary & Alternative Medicine) Including but not limited to diet, exercise, yoga, acupuncture, meditation, herbal remedies, MMJ.  Do they encourage their patients to seek out other avenues that might help you cope and live with your disease? ****As with anything please consult a doctor before making any changes to your daily routines, diet, medications, supplements etc…****

2 Replies to “Multiple Sclerosis & Finding A Doctor: 10 Things To Consider”

  1. I found my MS Dr through a local MS meeting and.still go to him 11 years later. At first and until 3 months ago the trip was 90 miless one way but I have now moved closer and it doesn’t take but 45 minutes to get to his office instead of an hour and a half or more generally. It was worth the move. I was teasing him about raisling his kids the last time I was there and his oldest is now in Duke University. So you are right … I tried to pick one out online first and that was a total disaster. This Dr rocks and is a MS doctor and a Neurologist.

    1. Docs that ROCK are great! I have actually had to change doctors from the one that I mention in this post – and wasn’t sure about him to begin with BUT have again developed a great relationship and feel SO thankful to have found yet another doctor that seems to get me:)

      Thanks for sharing!!!!:)

      Meg (aka BBH)

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