Do I have multiple sclerosis? It is a question I’ve been asking myself for months. My neurologist is 85% sure I do as of Tuesday, but she won’t diagnose officially until after my spinal tap and some blood tests next week. I teach English at a community college, and I’m worried about the spinal tap procedure and recovery, especially after reading horror stories online, so I decided to wait until the end of the quarter to have it done when I don’t have to worry about work and grading papers and answering student e-mails. That day is almost here, bringing me ever closer to the answer to my question.
Do I have MS? I knew I did, deep down, that January morning when the vision suddenly blurred in my left eye, the world viewed through it a smudgy haze of white and gray, ominous and dim. It’s what hopelessness looks like. My optometrist ran me through a gauntlet of tests. She has always been thorough, so I wasn’t alarmed until she brought out the color book, where numbers appear in circles made of bubbles to test for color blindness. I remember loving a book like that in the nurse’s office when I was in elementary school, how bewildered I was by anyone who had trouble seeing the numbers clearly defined inside. So my stomach sank when I knew I was looking at blue and purple and couldn’t find the number, no matter how hard I focused. I also struggled with the red and green. I’d been there for hours at that point, my eyes strained, head aching. The optometrist then sent me to a retinal specialist for hours of further testing. Please let it be something fixable, a detached retina, I bargained, even though it would mean eye surgery, a possibility that would have seemed like the end of the world the day before. Sadly, it was not. The retinal specialist and his assistant exchanged worried looks, scheduling me for an MRI.
I had the MRI the next morning. I’ll write about MRIs in a future posting, but it was a terrible experience. There was no time for my doctor to prescribe a sedative, so I had to go in as a bundle of nerves and fight the urge to push the button to get out the entire time. Back at the retinal specialist the next day, I learned I had optic neuritis (ON), the first sign of MS in about 20% of patients. It was my aunt’s first sign, too. She passed away because of MS a few years ago, a loss that remains heavy on my heart. The retinal specialist told me I almost definitely had MS, even though it wasn’t his area of expertise, and set up an appointment for me to see a neurologist soon after. I cried with my parents and husband that evening, convinced things were going to change very quickly, that life as we knew it was over.
The neurologist I went to see calmed my fears. There were no lesions on my brain MRI, he said, though we were going to do MRIs of my cervical and thoracic spine just to be sure there were none there, either. He said if I wanted, he could refer me to the MS clinic at the medical center, but he let me know the wait list was usually months long. I was comforted to know that there were no lesions, so I declined at that time. Having done a lot of reading about optic neuritis and MS, I knew that it could be clinically isolated, and with no lesions, I had about a 25% chance of developing MS in 5-15 years. It offered me hope, especially when the spinal MRIs showed no lesions, either. At a later visit, the neurologist let me know he was retiring, so I decided to get on the waiting list at the MS clinic since I was going to have to change providers anyway. That was in February, and my appointment to see the doctor I wanted couldn’t be scheduled until October of 2018.
Fortunately, the clinic called in March about an opening, so I was able to see the specialist sooner. There are two MS experts in my state, and people travel for hours to see them. My husband and I went to the first appointment, and I wasn’t nervous because I had no lesions yet, and my eyesight was improving. I wondered if I even belonged there, though the med student who did my intake assured me that they would want to follow me even if my ON was a clinically isolated symptom. When the doctor finally arrived, she asked if I wanted to see my lesions. “What lesions?” I asked, certain she had made a mistake. She turned the computer my way and showed me a spot on my brain and another on my spine. Both had been missed by my first neurologist and the radiologist who wrote the original reports. With a single lesion after an attack of ON, I knew a person’s chances of having MS increased to at least 75%. I was so shocked, I cried for the rest of the appointment. My world shrank.
We scheduled three-month follow-up MRIs, which I completed last week. In the month before those scans, I began getting burning sensations in one of my legs, bands of fire that would come and go. Then both of my legs began to tingle, down to my toes, sometimes resulting in mild numbness, especially with exertion. So it was no surprise yesterday when I went back to the MS clinic to see three new lesions, two on my brain and one on my spine. They are small, and I’m fortunate not to have more, but it makes my diagnosis almost a certainty. My doctor and I spent 45 minutes talking about possible treatment options if I’m diagnosed after my spinal tap next week.
I’ve spent the past five months reading so much about MS and treatments but also browsing other people’s blogs to learn about their experiences. MS is unique for each person who has it, and I was discouraged not to find too many people writing about living relatively normal lives with it. I needed the hope such stories would bring. Many started blogging only after the disease was causing major problems for them, and those stories are just as important, but I wasn’t ready for them. I wanted to know about people’s experience with optic neuritis, spinal taps, the early stages of MS. Maybe this can serve as that narrative for someone else. Welcome.