From Medical Student To MS Warrior: Navigating Life With Multiple Sclerosis

I was diagnosed with multiple sclerosis during my second year of medical school. It happened while I was on a neurology rotation when I approached the neurologist after a lecture and expressed my suspicion of a flare-up. Subsequently, a lumbar puncture and a contrast brain MRI confirmed the diagnosis, leading to my treatment with IV steroids and later disease-modifying medications.

It has now been 18 years since my diagnosis, during which I have taken various disease-modifying medications, regularly seen my neurologist, and undergone routine brain MRIs. Throughout my appointments with the neurologist over the years, we have discussed my care goals and my overall quality of life. These conversations involved weighing the risks and benefits of different medications and the pros and cons of contrast brain MRIs. Specifically, we acknowledged the limited value of contrast imaging when there is no suspicion of a flare-up, as well as the potential risks of gadolinium accumulation and nephrogenic systemic fibrosis due to repeated lifetime MRI studies. Consequently, we agreed that I would only undergo contrast brain MRI if there were concerns about a flare-up.

During a recent visit to my neurologist for a routine MS follow-up, I went to the radiology department for a brain MRI without contrast. The technician intended to administer IV gadolinium, but I politely declined and explained that my neurologist and I had decided on a brain MRI without contrast. An hour later, I completed the brain MRI without contrast, and while waiting for my appointment, I accessed the MRI report in my patient portal.

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To my surprise, the imaging report began with the statement, “The patient refused to have contrast.” This puzzled me because I had not refused it; rather, my neurologist had not ordered it, and it was not the procedure for which I had given consent. I discussed this with my neurologist, who was also unsure about the discrepancy. It seemed like a misunderstanding. Consequently, I returned to the radiology department to request the removal of the statement claiming that I had refused contrast from my medical record. They directed me to the medical records department, and from there, I was referred to the patient representative.

The patient representative informed me that the radiologist has the authority to change the MRI order to include contrast without consulting the patient or considering the clinical context. They acknowledged my concerns about gadolinium risks and the lack of discussion with my neurologist, but stated that it was their policy. This revelation left me feeling disoriented, as if the health care system was acting upon me rather than involving me in the decision-making process.

As a patient, I have experienced a loss of control since my diagnosis. I did not choose to have this disease or the impact it would have on me. However, I have learned to adapt and focus on managing it to the best of my ability. Shared decision-making with my neurologist has been instrumental in regaining a sense of control and preserving my dignity.

The patient representative explained that they were unable to remove the statement “patient refused contrast” from the report. When I inquired about the electronic medical record (EMR) system they used, she mentioned “Epic.” I suggested that it might be a drop-down menu or a pre-populated order set and proposed the option of adding “Patient declined contrast” to the system. I also recommended creating a separate template unconnected to the contrast option for future reference. I encouraged the patient representative to raise these suggestions with the radiology leadership team.

As both a patient and a physician, I have observed the power dynamics between system-centered care and patient-centered care. Being left feeling helpless as a patient, despite understanding the health care system from an insider’s perspective, was disheartening. Consequently, my brain MRI report still carries the inaccurate statement that I “refused contrast.” I can’t help but wonder if the same issue will arise during my next brain MRI. As a physician, it feels futile to strive for system improvement and advocate for patients when I encounter similar obstacles within the system as a patient.

While sitting with my own patients as a psychiatrist, discussing treatment options, thoughts of the Dawson fingers around periventricular areas in a brain MRI cross my mind. I observe the apprehension in my patient’s face as I present different treatment choices, fearing that I might impose a treatment on her, thus undermining her ability to make decisions about her care. In response, I take a calm breath and reiterate that she has the right to decline any recommended treatments, provided she comprehends the risks and benefits involved. In the medical record, I document the conversation, stating, “Patient was counseled about different treatment options. After discussing risks and benefits and engaging in shared decision-making, the patient declined the offered treatment but is aware of her options.” I make a note of the time spent discussing and understanding her care goals and desires. Consequently, my patient leaves the session feeling heard and empowered, knowing that her wishes have been respected.

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