I was probably texting while driving.
Okay, before you come at me with the pitchforks and torches, let me gracefully backpedal a bit. I’m sure I wasn’t texting, but I almost certainly was looking down at my phone, fiddling with Spotify or something, in my lap, at a stop light. You know, like a responsible law-breaker (sheesh). Anyway, that setting—in my car, looking down—was the first time I felt…the sign.
In this case, I’m not talking about a sign from God or the universe (although, if I wanted to be really philosophical about it all, I might claim that, ultimately, it was), but a very earthly, physical sign. When I lowered my head down, chin to chest, I was surprised by a sudden sensation—I’ve described it as an electric, numbing feeling—moving instantly from my neck, down my back and into my red-light stopped rear-end. It didn’t last long; when I lifted my head again, it was gone. And it didn’t hurt, it was just weird.
This was, I think, sometime August, 2015. The WNT (Weird Neck Thing) kept happening. Anytime I’d lower my head all the way forward, zap! WNT. Electric numbness down my back. I hoped it was a fluke and would go away on its own, but when it didn’t, I did what I usually do when unfamiliar bodily things happen: I kind of just ignored it.
That’s pretty much been my M.O. as an adult, re: medical issues. If it’s not gushing blood, protruding bone fragments, or physically preventing me from doing stuff I want to do, I don’t bother going to the doctor about it. It’s worked out pretty well for me so far. I’ve been generally healthy for my adult life so far.
So, side note: I do have narcolepsy. I’ve had it since I was a teenager, though it wasn’t officially diagnosed until 2001, shortly after my 24th birthday. My narcolepsy isn’t terribly severe (it’s nothing like this for me), and for 15 years I’ve been able to mitigate the symptoms pretty well with medication and preventive napping. I only bring up the narcolepsy at all because it explains why I have regular visits with a neurologist, something that most people don’t normally do. Despite what I said above about ignoring medical complaints, I do see my neuro (‘sup Dr. Ullman!) a few times a year to monitor my narcolepsy meds and such.
So anyway, it was at one of these routine visits with Dr. U that I was like, “Hey, you know about nerves and stuff. This weird thing has started happening with my neck. Should I be worried?” I described the WNT, he asked a few questions (Have you experienced tingling anywhere else? [Yes.] Any vision problems? [No.]), then said, “Yeah, we should probably send you for an MRI and see what’s going on.”
I wasn’t really worried. My neck has been screwed up for years, and I knew this. Blame it on a lifetime of high-impact sports, really deplorable posture, and zero attempt on my part to make stretching/flexibility a life priority. I expected the MRI results to show that my neck was a mess.
But when Dr. U’s office called two days after the MRI and asked if I could come in tomorrow to talk to the doctor about the results, I paused for a minute. Couldn’t it wait for the follow-up we had scheduled later in the month?
I went in and I was expecting that Dr. U would tell me I had disc damage and maybe, worst case scenario, I would need surgery to fix it. Disc issues didn’t come up at all. Instead, he told me that the MRI showed scar tissue on my spinal cord, and the meaning of this observation did not resonate with me right away. I immediately associated scar tissue with some sort of trauma or injury. But I hadn’t suffered an injury to my neck…
The long and short of it was that the scar tissue was indicative of a demyelinating condition, the most common of which is MS. This damage to my spinal cord was what was causing the WNT, which, he also told me, had a name: Lhermitte’s sign. (pronounced lare-MEET) It was given its name by a French neurologist (Jean Lhermitte, pictured below in his youth, sporting an epic array of facial hair) a few years after being identified by some other French neurologists early in the 20th century (not sure why it wasn’t named after those guys…feels like a real Tesla/Edison saga).
The WNT—“the sign”—which I refer to now just as Lhermitte’s, or as my kids have dubbed it, “Lermy’s,” was the catalyst that ultimately led to my MS diagnosis. But that’s another story.
