I was anxious and excited to finally talk to a neurologist. It had been five days since I lost vision in my right eye. Five days of doctor’s appointments, steroid infusions, blood draws, and an MRI. Five days of Googling symptoms, wondering, and worrying about what was wrong with me. Five days with no answers. I wanted information, and was afraid of what he might tell me.
By this point, I had figured out MS was the mostly likely, but not only cause of optic neuritis (the sudden loss of vision in my right eye due to inflammation of the optic nerve). I had read that there is no test for MS, but several tests that are commonly done to look for signs of MS and rule out other causes. So, I was not surprised by by what the neurologist told me.
The appointment was on video. In fact, all…let me count…seven? I’m not sure. Seven, or so, neurologist appointments I’ve had so far have been on video or phone due to COVID. I haven’t actually seen a neurologist in person. Before my first appointment, they sent several emails and texts with instructions on how to log on to the video visit, to test my camera and mic, and to be early. I DID NOT want to miss this appointment. So, even though I’d been doing video calls on Zoom and Teams for months, I logged on very early, tested my camera and mic, and sat and waited for over 15 minutes, staring at my computer, waiting for the neurologist.
He appeared, exactly at the scheduled time. He looked young. That was my first thought. And, it made me nervous. I tried to push that thought out of my head. I remembered being a new, young lawyer, and people doubting my abilities based on my appearance. He’d been through medical school. He was a neurologist. And, I had no idea how old he was. Maybe he just had good genes.
He was nice and calm and reassuring. He had reviewed my brain MRI and told me that I had lesions, which could indicate MS, but the lesions were few and small. He said that if he saw an MRI with these lesions, in isolation, he wouldn’t be concerned. But, the lesions combined with the optic neuritis made him concerned that it could be MS or some other condition.
He said he wanted me to get a lumbar puncture and more blood work. I knew a lumbar puncture, which is really a nice way of saying spinal tap, was the next test for MS. It sounded scary and painful, but I knew it was coming and I was willing to do anything to get answers. I’d had a spinal block for my son’s C-section, and I didn’t remember that being a big deal (which, in hindsight, might be because I was so exhausted and concerned about my son that I was oblivious, or I’ve blocked it out). The neurologist said the lumbar puncture used a smaller needle than the spinal block and made it seem like it was a less complicated procedure.
He also emailed me after our appointment and said that after consulting with other neurologists he also wanted me to get a spinal MRI. Again, not excited about the MRI, but I’d already done it once and I could do it again. Anything for answers. And, if I had MS, I wanted to know as soon as possible so that I could do everything in my power to slow its progression.
He explained that if the testing confirmed MS, he would want me to start medications. The safest medications for MS, the ones he’d want me to start with, were daily injections. This was the only thing he told me that I had not been prepared for and I was not excited about the idea of daily injections. I don’t have a huge fear of needles, but I look away when I get a shot or my blood drawn. I wasn’t sure if I could give myself a daily injection. He said if the other tests were inconclusive, he would have me do a follow up MRI in six months and continue to monitor. The idea of not knowing and living with the uncertainty for months felt unbearable. As weird as it sounds, from early on, I kept hoping for an MS diagnosis. I wanted to know. I wanted to treat it. And, I didn’t want it to be something worse.
Overall, I felt a burden had been lifted. I could exhale. The tension I’d been holding in my body released a little. It was likely MS. I had knowledge. I could research and read all about MS, learn what to expect, and what I could do. I felt more in control. There was a plan. Lumbar puncture, spinal MRI, blood work, and follow up appointment.
I had finished the infusions and was slowing weening off steroids. My vision was gradually improving and I was easing back in to work, from home. I had follow up appointments with the eye doctor and neurologist, another MRI, and more blood work to do. But first, the lumbar puncture.
Despite what the neurologist and Google said, the lumbar puncture was awful.