MS Patient, Ph.D.: First Trip to the Frontline
My experience as an immunologist diagnosed with MS
I received my training as a Ph.D. student working in an immunology lab on the medical campus of a major research university, so I never expected to have problems communicating with physicians, especially not about an autoimmune disease. However, when I was confronted with my first MS relapse, I struggled with finding the right words to describe what I was feeling. Unfortunately, my doctors also did a poor job of explaining MS to me. Allow me to walk you through the days after my first relapse, to show you how even someone with a strong background in immunology can be caught unprepared by a diagnosis of MS.
It all started when I woke up on a Monday like any other, except that I had a new sensation from my hips to my toes that felt like when your limbs “fall asleep” after being in one position without proper circulation for too long. This sensation wasn’t completely unusual for me; I would wake up every now and then with my legs “asleep,” but usually after a few minutes of adjusting my position, by lying flat in bed, they would feel normal again. However, this particular morning, I was in a rush to get to the lab, so I skipped the flat position and just got up to get ready for the day. Once in the lab I realized that the odd numb feeling had never gone away.
“What could this be?” I asked myself. “I slept in an odd position last night, so maybe I pinched a nerve in my back?”
A quick online search listed some things that could relieve the symptoms caused by a pinched nerve, which included getting exercise, getting a massage, standing up rather than sitting, or taking an NSAID. So I decided to still go to my kickboxing class and I also convinced my husband to massage my back.
The next morning, my legs and feet were still not feeling better. In fact, I was uncomfortable enough that I wore exercise pants instead of jeans and a pair of shoes with the loosest laces, to minimize the contact of rough materials pressing up against my skin. Walking had become painful, like when you shake the “sleepy foot” and you get that jolt of electricity. I decided to take ibuprofen, which, I reasoned, would relax my muscles and release the pinched nerve. My muscles did relax, but that, coupled with the jolts, just made me feel less stable when walking around. I spent that day mainly standing up while doing my experiment, which didn’t really help and only made me exhausted. In the evening, the numbness had crept up to my ribcage. This concerned me enough that I decided to book an appointment the next morning with my general practitioner.
When I arrived at her office the next day, she examined me and had me do some basic tests, such as walking in a line back and forth. She also asked me whether I had felt clumsier than normal lately. While I am normally fairly uncoordinated, I was possibly even more so than usual, especially thinking back at the effects of the ibuprofen. She seemed alarmed at hearing this but calmly told me that she wanted me to get an MRI done right away. Unfortunately, the MRI at the health plan was all booked up, so she sent me to the emergency room (ER) with a sealed envelope. She didn’t mention any probable diagnosis to me at the time, and anyway I was convinced that I had a pinched nerve caused by an awkward sleeping position. After arriving at the ER, the triage nurse opened the letter from my practitioner and read aloud the reason listed for the MRI, a phrase that I didn’t quite catch.
“Was one of those words myelin? Oh, it’s probably some fancy term that means that they want to check for a pinched nerve,” I said to myself, clinging to the sleeping position as an explanation for my symptoms, since it happened right before I noticed the numbness. (However irrational, my current state of mind reassured me that correlation equaled causation, at least in this case.)
Once I finally saw a doctor in the late afternoon, I described that I had slept in an odd position and then felt numb from my hips to my toes. I kept calling what I was feeling “numbness” when in fact I was pretty sensitive to touch. However, the doctor did a physical exam that included a pinprick test and noted that I had different degrees of sensitivity to the prick across my body. She started keeping track of the borders where the sensations changed across my back with a sharpie. I didn’t really have a great way of describing what it was that I felt, but I was able to say when the pricks bothered me more. The doctors asked me lots of questions regarding my recent health history, and the only thing that seemed relevant was that I had just recovered from a cold that I caught while on vacation in Paris, but they still weren’t sure what was causing my sensitivity. At some point, the doctor ran out of questions and was so stumped yet intrigued by my case that she said, “This is such an interesting case.”
“Interesting?!” I exclaimed to myself, “Okay, I sometimes also describe weird findings in lab as interesting or fascinating. But I don’t want to be interesting! I want there to be a quick fix to whatever I have. I’m sure they’ll figure this out after they run the MRI.”
A neurology consult was eventually called in, who did the now almost routine neurology exam (walk up and down the room, touch my nose and their finger, pinprick, etc.). But he also had me look at the red color of his badge and see if the shade changed over time. He then mentioned that if I had MS, I would have seen a change.
“Whew! The color didn’t change!” I comforted myself. “It’s definitely not MS, what a relief! I knew it … just a pinched nerve.”
The neurologist also didn’t know what I had but was concerned that the numbness was spreading upward. He was afraid that this could affect my breathing, so I was admitted to the hospital, where I was finally going to get the MRI of my lumbar spine. Once on the neurology floor of the hospital, I met a team of doctors who went through the same set of questions and tests as in the ER. Around midnight I got the results of the lumbar MRI, which came back negative.
The head neurologist then decided to start fresh and have me again relate the recent events. I was still calling all my sensations numbness, when in fact the initial foot-falling-asleep sensation in my legs and feet was numbness that then became a jolt of electricity that made walking uncomfortable, while I mainly felt tenderness in my back up near my ribcage. He asked a series of questions to try to understand what I felt and finally said, “It’s not just numbness then in your legs and feet, but also tingling.”
Hearing his succinct description was a relief, like someone finally clicked the pieces together. It turns out that there is a specific set of terms that are used to describe the types of symptoms that I was experiencing, which are entirely different from the jargon that I learned as an immunologist or the colloquial terms that we use to describe sensations. I am grateful that my neurologist finally sat down with me and asked the right questions, and was able to help me put into words what I was actually feeling. This helped him run the right tests and, from that point on, I think it was a simpler path to reach a diagnosis.
By Thursday afternoon, just a few days after my initial symptoms began, the neurologist came to my bedside and asked, “Do you know what MS is?”
“Yes, of course I do. Why would he ask me that? Is this a quiz? ... wait, is he telling me that I have MS?! And now he’s just waiting for an answer from me. Sure, I know what MS is.” I thought to myself at the time, but I was only starting to realize what living with MS would mean.
I suddenly wanted more information, but more specifically, guidance in getting quality information about MS. This might seem counterintuitive, since as an immunology graduate student, I am probably the type of patient most qualified to find accurate information about an autoimmune disease. However, I didn’t want the first information about living with MS to come from a biased source or only from reading negative stories by wandering out onto the internet on my own. I wanted factual information, tailored to me, the newly diagnosed patient, and curated to provide me with accurate expectations for my recovery and treatment options. I never received such a perfect package of information. The best I got was a print out from UpToDate (a resource used by doctors that provides evidence-based medical information) about MS and a recommendation that I browse the National MS Society webpage.
If you’re a clinician and got this far into my first post, then maybe you care about improving the interaction with your patients. If so, let me offer some suggestions based on my experience:
- Take the time to help patients find the right words to describe what they are feeling, because they might not be able to translate their sensations into the appropriate medical terms.
- Make sure to involve your patient as you come up with hypotheses and order tests to figure out what is causing their symptoms.
- Take the time to explain a new diagnosis to a patient (even if they know something about MS).
- Explain how the current symptom relates to the disease as a whole, what are the causes of the symptoms, and explain what to expect from their recovery in the next few days and weeks.
- Finally, even though MS manifests itself differently from patient to patient, draw from your clinical experience to help patients understand how having MS can affect them.