Axonal Destruction: Band Name or Condition?

I remember being really little and taking medicine. Of course, it tasted ungodly horrible, and inevitably I'd complain about the taste. My mom would tell me that the worse the medicine tasted, the better it worked.

Well, as an adult, I can't help but think of that little exchange, but I replace horrible “taste” with horrible “side effects”. You see, I've been on Tecfidera for about 18 months, and it's GREAT for me! I really don't have side effects to speak of from the medicine. The worst thing is that sometimes I get flushing in my face that makes my face feel like it's on fire. It doesn't last long, and off I go to do the things.

I recently had a neurologist's appointment. Part of the appointment was spent discussing the results of my second MRI in 6 months. It's the second one in 6 months to show a new lesion and one enhancing lesion. I never really heard the term “enhancing lesion”, or I don't remember hearing it. An enhancing lesion is one that reacts with the Gadolinium, and it's assumed that enhancing lesions are active lesions. Hmm? What's Gadolinium? It's something you get injected with when the doctor wants a contrast MRI. If you want to know more about it, you can read about it here: https://www.insideradiology.com.au/gadolinium-contrast-medium/

I learned another new phrase when used in the context of MS: Black Hole. Turns out that I have a Black Hole in my cerebellum. I'm pretty sure she used plural, as in Black Holes, but we'll stick with the singular for today. Does anyone else know what a Black Hole is? Or what it means to have a Black Hole in the cerebellum? Anyone? Bueller?

Let's go back to early biology and the basic parts of the brain that control which functions. We have a cerebrum, a cerebellum, and a medulla oblongata (thank you, Mrs. Gardner, my 6^th grade science teacher). Cerebrum: touch, vision, emotions, learning. Medulla oblongata (AKA Brainstem): Automatic functions. Cerebellum: Posture, balance, coordinate muscle movements.

So, what does it mean to have a Black Hole in your brain? “Axonal destruction and irreversible damage”. Incidentally, Axonal Destruction would be a great band name. Anyway, in plain English, it means that the nerves in the area are dead. To paraphrase the coroner from The Wizard of Oz, not only merely dead, but really most sincerely dead.

If you recall my post about tap dancing classes and the reasons why I left, this actually explains a lot! In reality, not clinically, it means that I stumble a lot. I feel like the floor gets tilted while I walk, causing me to do the drunk sidestep. Sometimes my body won't move the way I expect it to, even when I consciously will it to do something.

In my information overload state, I forgot to ask her where my enhancing lesion is. I suppose it doesn't really matter.

Okay, now after all that, you might think that I'm feeling really crummy, but for the most part, I've been feeling really good. Certain tweaks to medicine, new medicine, and more activity have helped. Plus, I'm still not smoking. When I started this post, I intended to write about how my thyroid medicine is helping, but I'll save it for another post. This one is already long enough.

Briefly, I want to tell you about the ultimate outcome of this visit. I get blood work in September, an MRI in November, and a follow-up visit in December. In December, we'll talk about changing my medicine if warranted. My next option is Ocrevus, the twice yearly infusion. That has its own risks, and in addition to the risks, my neurologist wonders what we do after Ocrevus if I need to change medicine. I've tried 5 medicines since my diagnosis in 2004, so it's not a needless concern. We'll see, right?

PS- How badass am I to cause axonal destruction and irreversible damage??