Miss to Mrs. to MS
The last six months and my road to diagnosis have been a bit of a whirlwind. My husband and I were married in September, I started experiencing symptoms over Halloween, and spent the two weeks of our November honeymoon completely lost as to what was causing the numbness, nausea, temperature sensitivity, and double vision. At the time I blamed it on tropical heat and humidity and foreign foods, but when the double vision worsened I knew something was up. Immediately on our return home I went to my eye doctor; the double vision was only occurring in my left peripheral vision so I thought maybe I just had strained my eye or tired it out with endless time staring at a computer at work. I owe the fact that I immediately started on the path to diagnosis 100% to my ophthalmologist. I say this because I walked into that office thinking only about my eyes; after explaining my symptoms and working through a litany of tests to rule out any issues with my actual eyes (there were none), Doctor asked, “Have you been experiencing any numbness?” I was thrown off by that – it seemed an odd question to have your eye doctor ask. I had been experiencing numbness in my left leg, but had passed it off as nerve issues related to an old knee surgery – I’ve always had some issues with sensation in that leg. Initially I said no, because again, knee surgery assumptions, but then figured I might as well tell her about it to see how she felt it was related. That’s all it took – an exam for double vision and telling her about my numb left leg – and she said she suspected MS, just like that. I give her major credit for this because not even my first neurologists connected the dots that quick.
In the world of multiple sclerosis, symptoms in October to diagnosis in February is a quick turnaround; I absolutely understand how lucky I am to have been diagnosed quickly. For those of you reading this who did not have such a quick diagnosis I can’t even begin to imagine the added frustration and uncertainty that came with that process – I’m sure you understand even more than I do the odd sense of relief that comes with diagnosis. That’s a major part of this process that my healthy friends and family do.not.understand. Relief. I get it – it’s bizarre to think that someone would find relief in being diagnosed with an incurable, lifelong, potentially disabling autoimmune disorder. But when you experience months of weird, uncomfortable, sickening, and unfamiliar symptoms in odd combinations or at unexplained times, with no answers, it is terrifying. It’s also incredibly frustrating to not have a solution for any of the issues. I’m what my mom calls a black and white thinker; there is little to no grey area in my world. If you identify a problem, then there’s a solution, you just have to find it. Well, when you can’t put a name to the problem you can’t find a solution, and that does not work in my book. Relief. That’s what I felt when I was finally told definitively (as much as you can be with MS) that all of my symptoms traced back to MS. Diagnosis meant it was time to find a solution, and that was something I was ready to put energy into.
If I could offer one piece of advice to someone working toward a diagnosis or even someone who has already been diagnosed, it would be find a neurologist you trust, who listens to you, and who you feel comfortable with. Don’t be afraid to be your own best advocate; neurologists are the key to all things MS in your life, from symptom management, to disease-modifying treatments should you choose to use one, to just general quality of life. You’re going to be stuck with them potentially for the rest of your life, so you might as well like them!
I learned this lesson real quick. When I went to my very first neurology appointment in mid-December, at the recommendation of my primary care doc I brought along a timeline of any and every symptom I had experienced (HIGHLY recommend doing this – it makes your life and the doctor’s easier and keeps you from having to remember everything in a stressful situation.) So I pass this timeline along to my neurologist, who puts it in a folder and has me walk him through all my symptoms without even giving it a glance; that probably should have been my first red flag, but I didn’t think much of it. I had already had a brain MRI at this point at the request of my PCP, so he showed me my MRI and said there were no lesions he could see, but he wanted another one done with contrast. He ran threw the litany of neurology tests that make you feel like a bit of an idiot; if you’ve already seen a neuro you know what I’m talking about – touch your nose, walk heel to toe, rotate your arms, get poked with a safety pin – it feels like you’re just being asked to do weird stuff for the doctor’s entertainment honestly 😂 Based on the locations of my numbness, he also ordered MRI’s of all three sections of my spine; as someone who gets very claustrophobic in MRI machines, I wasn’t all that thrilled about that, but thus is life in the world of MS!
Long story short, I get my MRI’s done and go in for my follow-up, with some new symptoms like intense muscle cramping in the same areas as I was experiencing numbness. I explain this development to the doc, and he responds with “You’ve read your books,” with a grin and then moves on to talking about my MRI’s. I remember just looking at him wanting to go “huh?” but I ignored it and looked at the MRI’s that showed a pair of lesions, one on either side of my thoracic spine. Based on this information and his view that I’d had a single “attack,” he said he didn’t think it was MS, instead he was labeling it as “idiopathic transverse myelitis” – in English, that’s a deterioration of myelin (myelitis) on both sides of the spine (transverse) with an unknown cause (idiopathic), likely a one-time virus. He said that my double vision was being caused by migraines despite experiencing no pain and having a history of migraines that always come with debilitating pain. I wasn’t convinced on the migraine front, but hey, he’s the neurologist, right? He put me on an anti-anxiety medication to address the migraines and said we’d re-scan in a few months to see if there are new lesions; only then, he said, could he diagnosis MS. On our way out of the appointment, I reiterated the “you’ve read your books” comment and said to my husband, “I think he was implying I was making it up?” It didn’t sit well with the husband either, but we weren’t sure what to do with it, so we let it slide. I found very quickly that the anti-anxiety meds made me feel horrible, triggering extreme anxiety and anxiousness and disrupting my sleep. When I told the doctor, he seemed annoyed; he said I was probably just anxious about my health but we could try another medication “if I really wanted to.” That didn’t sit well with me, and after the “you’ve read your books” comment I realized I really wasn’t feeling comfortable with this doctor, I’d just been pushing my discomfort aside in favor of his medical degree.
I just happened to have a physical scheduled with my PCP shortly after, and I explained to her what had been going on and how I wasn’t sure I liked the neurologist I’d been seeing; she looked me square in the face and said, “If you aren’t 100% comfortable, then I absolutely think we should find you another option and get this figured out.” She referred me to a new neurologist to whom I took the same timeline I’d given the first; she was amazing. She walked through my timeline with me step by step, asking questions, and taking notes along the way. She ran the basic neurological tests, but also ran some vision tests and asked me questions no one had yet asked me, such as “is your double vision side by side or at a diagonal?” That caught me off guard – I hadn’t ever thought about it, but it was a level of detail that showed she obviously wanted every little detail. After reviewing my case she looked at me and said, “You are not having migraines, which I think you already know. So you can go ahead and start weaning off that medication.” She also explained that based on my timeline, I had not had one attack like the first neuro said, but that it was fairly clear I’d already had three: 1) double vision, 2) left leg, 3) torso – while the double vision and left leg numbness happened at the same time there was no way one lesion could have caused both based on where lesions would have to be located so that was my separation in space required for a diagnosis. The torso numbness nearly a month later gave the required separation in time, and just like that I technically had fulfilled the criteria for MS. To be as sure as she could however, she wanted another brain MRI but with a more detailed/intense machine as she was pretty confident there was a lesion there, we just weren’t seeing it on the MRI with lesser detail. Two weeks later I was back in front of her with a more detailed MRI image that, sure enough, showed 2 lesions exactly where she told me she thought they were. If that doesn’t instill confidence, I don’t know what does.
So there it is, my path to MS. From finishing my graduate degrees to wedding planning to joyfully starting my marriage with my wonderful husband to weird, confusing symptoms to fun (although moderately hindered) honeymooning to MS. Literally Miss to Mrs. to MS.