What makes my MS unique? The term "unique" is problematic, and not just because I'm a stickler for using the word correctly ever since that episode of “The West Wing” where President Bartlett corrected the PR guy from NASA, but also because, technically, everybody's MS story is unique, and yet none of them are, right? We all have common experiences, and it feels presumptuous to claim mine as "unique." I mean, like, what if we're all just living a dream in the mind of God?
Sorry. My medications can make me think too deeply sometimes. So here's my story. My diagnosis came almost accidentally. I'd been dealing with some back pain and a tingling sensation in my legs (that must be from the sciatic nerve, right? RIGHT?), and an MRI revealed some lesions. I received a letter outlining the possible causes for this (Lyme disease, lupus, multiple sclerosis, maybe prickley heat).
I, of course, did what any self-respecting man in his mid-thirties would do. I ignored it. I hadn't been near any ticks or been bitten by the sons of Romanian fortune tellers (I was VERY ignorant about what lupus was), MS was something that happened to “Other People,” and I was pretty sure the last thing wasn't really a thing. I did stop using aspartame based on the advice of a website I kind of looked at.
About a year later, I noticed numbness in the meaty part of my thigh. It was the strangest sensation. My leg was operating more or less normally. It just felt like the muscles and tissues on my upper thigh had been replaced with one of those gel-based ergonomic wrist rests. Well, tingling was one thing. WEIRD tingling was another. I went back to my doctor, who immediately ordered another MRI. Unsurprisingly, the lesions had not simply gone away of their own accord, and my great aspartame sacrifice had done NOTHING. The doctor then referred me to a neurologist. As anyone who has gone through the diagnosis of exclusion that brings us to MS will confirm, there was about a month of MRIs and spinal taps and so forth, and my neurologist confirmed that I had a relapsing-remitting course of MS. We discussed medication options, chose one, and that's where things stood for about five years.
Every once in a while, I would fumble with something, or trip over my own feet, or slur a word or phrase, and I would have a brief moment of panic, but that was about it. MS was just a “Thing I Had.” I even started to doubt whether I really had something wrong with me.
Still, we lived our lives in preparation of future loss of mobility. We went so far as to buy a house that had a bedroom and bathroom on the main floor, to ensure that if my mobility was impaired later in life, our house would be accessible. Little did I realize that nerves don't just deal with mobility. Why, they're involved with nearly your whole body!
A few years ago, I had a toothache. My dentist took an X-ray of the area and found nothing. Maybe I was brushing too hard? The next week, the tooth continued to hurt ― just a dull ache, but strange. And then one morning the ache turned into a spike of pain from my tooth up to just behind my eye. I went back to the dentist and again, they found nothing. She mentioned trigeminal neuralgia as a possible cause. I Googled this immediately on my return home, and it certainly sounded like what I was experiencing. But this was the internet! Web searches always wind up with the “Worst Case Scenario,” right? Well, my neurologist diagnosed me over the phone and immediately prescribed anti-seizure medications designed to calm that nerve down. Wouldn't you know a one-time Internet self-diagnosis turns out to be completely accurate, and it has to be me?
Trigeminal neuralgia (TN) is an inflammation (in my case caused by MS-related demyelination) of the trigeminal nerve ― a cluster of nerves beginning at the jawline under the ear and fanning out along the jaw, up to the eyes and the ear. It’s basically the whole side of your face south of the eyebrows. TN is usually unilateral, affecting just one side of the face (thankfully that is the case for me), and when it's flaring, the pain is excruciating. It's painful to eat, brush my teeth, smile, kiss my family, wash my face, read to my children, and of course, perform standup comedy. I don't care what kind of house you buy; you just can't prepare for that.
TN has been around for many many years, so long that it actually has a French name ― tic douloureux ― which sounds like a small-time hood in a crime novel set in New Orleans, but in fact, translates roughly to "Painful Twitch." “Painful Twitch,” of course, sounds like a fake punk band in an old episode of Charles in Charge. It does have another, older and (as older names for medical conditions often are) more sinister name, "the suicide disease." Now, don't panic. The name comes from a time when treatment options were more limited. I am confident in my prognosis for controlling the condition and that I will never get to the point where the pain becomes unbearable.
Well, that’s my story. The National MS Society has provided me with tremendous support since my diagnosis through the connection my wife made. I have been extremely lax. She has been the hero in all of this. With every symptom, with every exacerbation, she immediately went to research my options, often with the aid of the Society's resources. Heck, I wouldn't even be involved in the walk if it weren't for her, but I’m glad to be this year’s Walk MS Ambassador for the Twin Cities.
Click here to read Matt's wife's blog post about her husband's diagnosis.