I Fired My Neurologist
and why it took me so long
I should have fired my neurologist when she told me I didn’t have Multiple Sclerosis. I should have fired her when she told me I did five minutes later. A good time to fire her would have been while I was picking out my own medication a few days after my diagnosis based on the brochures she gave me.
In all fairness, she didn’t do all of those things, but she inspired her employees to treat patients like she did. Because she was referred to me by another doctor, I felt obligated to work with her and her team. I was dealing with some scary stuff and I thought this neurologist was my life-preserver so I didn’t fire her when I thought I deserved better.
Instead I waited until she stole the one thing I needed most; hope.
Before I needed a neurologist.
In the Spring of 2006, I was training for the MS 150, a fundraising cycling event. The owner of the company I worked for has Multiple Sclerosis and inspired me to raise money for the National Multiple Sclerosis Society. He has been in wheelchair for more than 20 years and I was going to ride for him. He was my face of MS.
I started by training indoors and as the weather got nice, moved to outdoor rides. Life went on while I trained. I worked full-time and spent time with my family, but it was an unusually stressful time. I did some extensive travel and my grandfather died that Spring.
Everything seemed to build up and when I returned from a trip to Europe, what I thought was a little jet lag turned into a lot of vertigo. I had experienced vertigo before and I figured it was just some type of ear infection. My doctor thought the same thing. As the weeks progressed, I couldn’t walk a straight line let alone ride a bike.
Along with vertigo came fatigue. One side of my face and my hands seemed to always be tingling too. None of these symptoms were brand new, but I had never had them all at once.
Months later, I still felt like I was stumbling out of a bar whenever I stood up and went back to the doctor. In the beginning of July, I had missed the MS ride, still could not get on my bike and had my very own MS diagnosis.
My diagnosis wasn’t as tidy as the paragraphs above. Instead of a few sentences, it was days and weeks of fatigue, vertigo, and uncertainty. It was MRIs with Gadolinium contrast agents delivered via IV that made me want to throw up. It was eye tests, blood work, ultrasounds of my heart to rule out mini strokes, balance and neuro exams. And the cherry on top .. a blood patch to stop the debilitating headache caused by the hole left in my spinal cord during a lumbar puncture.
By the time I called for my test results, I was vulnerable, scared, sick and tired.
Me: Hi, I’m calling for test results from my lumbar puncture.
Them: Yes, we have them right here. You don’t have MS.
Me: (crying happy tears) Thank you so much!
Them: I can’t believe you didn’t know. We got your results back last week.
Me: That’s not possible. My lumbar puncture was this week.
Them: (big, painful pause) Let us call you back.
After the pause.
Them: Hi Courtney, Sorry about that. You do have MS.
Me: What? What should I do now?
Them: Come pick up some brochures and marketing kits and pick a drug.
Did I mention I was at work? I left and cried all the way home and off and on for days. Then I stopped crying and made MS my new job. I researched drugs, diets, clinical studies and lifestyle changes. I met and talked to people with MS to learn how they were living well with the disease.
I chose a drug that made me feel worse than MS and then started making small changes to change my life and disease. 2 months later, I scheduled an appointment with my neurologist.
While she was stealing my hope.
I believed that I could change the course of my disease and the research I did supported that. I visited my neurologist with a list of questions. I wanted her to believe it too and support my hope for a healthy life.
Me: Can diet, exercise or lifestyle choices change the course of my MS?
Her: No, not really.
Me: I know there isn’t a cure, but do you think MS is reversible?
Me: How many of your patients are improving?
Her: None of them are really improving. This is a chronic, progressive, debilitating disease. With MS, it’s a matter of how slowly or quickly MS progresses.
She measured the success of her work and her patients based on the speed of their decline. WTF?
I left the office in shock. I felt hopeless and betrayed. The next day, I remembered that this wasn’t about her. This was about my health and happiness. This was about my family and friends and my life.
So I fired her.
Why it took me so long to fire her.
The saddest part about this story is that it is not remarkable. We accept substandard treatment from medical professionals everyday. Bad doctors stay in business far longer than they should.
- By the time we need a medical specialist we are sick and scared and often desperate for an answer. We rely on referrals and go through the motions.
- We think they know our bodies better than we do. A traumatic diagnosis will make us question everything. We ask why and how and wonder what we did and why we didn’t see it coming. We stop trusting how we feel and instead trust a perfect stranger to know what’s best for us.
- We believe everything they think. When a doctor tells us that a disease is chronic, we believe it. When they tell us that a certain drug will help, we believe it. We believe what doctors say about us, our conditions and our futures even when they’ve only known us for 20 minutes.
- We forget that we have a choice. We know that when we hire someone to do work in our home or business that we can terminate the relationship if we are unhappy with the service. When we work with doctors, we often dismiss the fact that they work for us.
- We lose hope. Uncertainty, exhaustion, bad advice and poor treatment lead to a complete loss of hope.
We have to build medical teams that will partner with us, listen to us and believe that we have a chance to be well. It is time to raise our expectations, participate in the process and remember that without hope, healing cannot exist.
You deserve better. How have you let doctors impact your well being for better or worse? Was it a neurologist, oncologist, cardiologist or general practitioner? You may not be responsible for your disease, but you have a responsibility to it. Take back the power and lead your team.
I have been working with an amazing neurologist and medical team since late 2006. They care about me and treat me like a partner as we make decisions that affect my health. My MS is not chronic or progressive. I feel well and recent MRI results demonstrate a shrinking lesion on my spinal cord and increased white matter volume in my brain.
There are great doctors and specialists out there, and it is our job to celebrate and recommend them. There are also some shitty docs out there and it is our responsibility to fire them and hand-pick our medical teams whenever we have the opportunity.
note: This is my story. I recognize that I am fortunate to choose my medical team and know that isn’t an option for everyone. I also understand that MS and other disease is different for everyone. Our one common denominator is hope. It is available to all of us.
read more and connect with Courtney on Be More with Less.