I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?
Most medical professionals seem to labor under the impression that neurologists are a special breed of narcissist, and sometimes I agree.
I’ll give you the highlights of my personal experience with 3 neurologists below, but first let me say that you have to try to find someone that’s right for you. You need to trust your neurologist and you need them to be accessible to you.
Would you like to hear a secret? For a neurologist to be labeled as “specializing” in Multiple Sclerosis, all they have to do is claim that they are one to whomever asks. There is no actual criteria.
If you are searching for a neurologist, request a list of MS specialists from your local branch of the National MS Society, but do not assume that self-proclaimed specialists is truly a specialist. Try to find as much word-of-mouth information as possible. Use sites like RateMDs and HealthGrades to learn more about potential doctors as well as the doctors you’re with already.
Evaluate and list important attributes when choosing your doctor. This is what I kept in mind during my search for a new neurologist:
- Physical Location – Is it within a reasonable distance if I have to go there during a relapse?
- Alternate Neurologists – Are there additional doctors available at the practice if my neurologist is busy or on vacation?
- Expertise – Is my neurologist really an MS specialist by my definition?
- Willingness – Is the doctor willing to listen to my concerns or to consider and suggest therapy?
- Responsiveness – Will the staff reply to my calls? Can I send a message to the doctor easily?
- Staff – Sometimes a doctor’s staff can be their best asset.
When you find a new doctor don’t burn bridges. It may take some time to switch to the new neurologist, you may have to go back to your old doctor one day, and if you find yourself in the emergency room your previous neurologist may be on-call to make decisions about your treatment. Be polite and courteous. You may find yourself wanting to tell your doctor off in a spectacular way, but try to restrain yourself. You don’t know what the future holds.
My personal neurologist history began in December of 2008 when I was randomly referred to Neurologist Number 1 after a lid specialist monitoring some eyelid spasms found lesions on my brain in an MRI.
Neurologist Number 1 officially diagnosed me and obviously loathed me from the moment we met. He doesn’t have a great bedside manner, but that’s not truly the reason I disliked him. He chastised me for having the disease and for not having been diagnosed sooner. Out of the blue, he ridiculed Native Americans. He failed to submit a prescription for me for Rebif for months. He yelled at me for not having begun treatment with Rebif while I was still waiting for him to submit the prescription. Every appointment ended when he would leave the room while I was talking to him…. he didn’t come back and I would eventually find my way out.
As this was my first experience with a neurologist I was concerned that they might all be this way. I worried what would happen if I switched to a new doctor and pissed him off. How would I switch when I would need to ask someone for a referral?
An aunt who also has MS talked to me on the phone about her doctor. When I realized another neurologist was in my area, I jumped ship. I called the specialist I had seen for eyelid spasms and asked for a referral.
Neurologist Number 2 would not consider me as a patient until they received my records from the previous neurologist. This left me in a bind – I had to tell the staff at my previous neurologist that I needed the records for a new neurologist before I could have potential access to the new doctor. I risked it, but the acquisition of medical records was a nightmare. After multiple assurances that my records had been sent I finally went in person to retrieve them. At the desk I was told that I would have to fill out a form and pay $25. Why had they never mentioned this? They offered to courier the records over, but instead I requested that they give them to me in person.
On the drive from neurologist to neurologist I looked at the logs of my 4 or so visits to Neurologist Number 1. He had not taken a single note during any of the visits. All the questions I tried to answer and symptoms I tried to list with a half-paralyzed mouth had served no purpose. He had made a single note that he wanted another MRI. There were no notes about prescribing Rebif, which might be why it was never prescribed for me by his office. I felt that I had done the right thing when I switched over. In the years since, I’ve found that medical professionals from ER nurses to my gynecologist openly despise the man as careless with patients and condescending towards staff.
Hopeful, I began to see Neurologist Number 2. He had a delightful manner and quickly put me on treatment. He even gave me a choice of which treatment to take. But his office was musty and I compulsively wanted to clean it. He refused to accept credit cards and I had to remember to bring a check for every appointment. I was concerned that his specialization in Parkinsons meant that I wouldn’t receive the best care for MS. He would never allow me to view my test results. He would only accept accumulated messages once per week – Wednesday afternoons. He worked with exam rooms open – I heard every detail of patients’ consultation during the typical 4 hour wait.
In the end, something completely different propelled me toward another neurologist.
He was scheduled to have the morning off, but his staff fit me in because I had begun to have a relapse. While he had always seemed full of integrity, this time he clearly believed me to be faking an MS attack. “You could just be holding your arm like that on purpose.” He ordered an MRI that night to see if I really had activity and told me that he would order a round of steroid infusions if I wanted, but that he didn’t believe anything was wrong. Then he told me I could just go to the ER in the future if I had an attack instead of calling his office.
I assumed he was cranky and that it would be an isolated incident. When I followed up three months later he was apparently still cranky. I was informed that there was no new activity on the MRI so I had not had an attack after all and that I really should get that possible tumor looked at that had been on my MRI reports since the first time he read one.
Tumor? What? I’ll end the suspense now – it wasn’t exactly a tumor but appeared to be tumor-like tissue in my adenoids. Benign and possibly something called Castleman’s Disease. During the process of obtaining the adenoidectomy I acquired a copy of the MRI and report for the ENT.
The first line of my MRI report stated that I had a new 6 cm enhancing lesion. I demanded to see my bloodwork and while he maintained that my liver enzymes were only double a normal level, simple math showed me that I was seven times the cutoff between normal and high. While I looked at the bloodwork he suggested taking me off Rebif because my levels had gone up (they had gone up, but only slightly).
Did he lie to me because he wanted me to feel like he was always right even when wrong? What had my other reports said that he kept from me? Why did he never mention the possible tumor before this?
My confidence was shattered and I found myself unable to trust him anymore. Lots of people at my MS Self-Help Group see a particular neurologist and had suggested her. I knew she wasn’t accepting new patients but I finally found myself on her waiting list a little more than 1 year ago. I was still uncertain of actually switching. With all of his flaws, Neurologist Number 2 seemed like such a good person.
And then I switched to Gilenya. He hated the process and he hated the paperwork. Following my first dose I had to answer questions to the pharmaceutical company. They twisted my benign answers into a complaint which required him to fill out a 2 page questionnaire. At his requirement, I took a day off work and spent hours in his office. I kept telling the staff there was no need to weigh me or take my blood pressure – “I’m only here for paperwork”. Later, after yelling “Just keep your mouth shut!” when pharmaceutical companies call, he told me that he was forcing me to have the office visit rather than answer the questions over the phone because he was not going to do paperwork for free. In fact, the questionnaire actually required no input or participation by me. This is when I really gave up on him.
Of course I’m still in the honeymoon phase with my Neurologist Number 3. So far, she’s fantastic. And while I’m claustrophobic and hate MRIs, I’m glad someone is finally going to scan my spine when the other two neurologists would not agree to do so in spite of my recurring MS Hug. She is a nationally renowned expert on Multiple Sclerosis and takes part in studies and research. Obviously, she is informed about the latest treatments and has reasonable and intelligent concerns. I feel like I’m safer in her hands, and the staff at this office actually behave in a professional manner.
Yesterday I had an intelligent discussion with a thorough doctor. Yesterday I was able to pay for my visit with a credit card for the first time in years. Yesterday I switched to a new neurologist matching every item in my list of important attributes, and I can’t wait for my followup visit in July.
What experiences have you had with your neurologist? Do you love your doc or are you ready to switch?