Tag: myelin

When I met with my neurologist, Dr. Ullman, after having an MRI of my cervical spine (that’s the fancy term for “neck”), he told me that the test revealed scar tissue on my spinal cord.

My first thought was, “Scar tissue? That’s weird. I haven’t had a neck injury. Scars come from injuries, right?”

He continued. “Something-something…this type of scarring is most commonly seen in MS….”

Whoa, hold up.

Now, because I want to be honest with you, patient readers, I confess: I didn’t really know what that meant.

Here’s what I did know:

• I knew that MS was a disease, hence, I knew this news wasn’t good. As awesome as it would have been for the doctor to say, “Your MRI shows that you have the spinal structure of a 22-year-old Pilates instructor,” I knew something worse was going on in there. Doc’s assessment confirmed that.
• I knew MS stood for multiple sclerosis. Even not knowing exactly what that meant, just thinking about the full name was a lot scarier than its abbreviated form. I didn’t know what sclerosis was, but this mofo meant MULTIPLE whatever-they-were!
• I remembered that President Bartlet had it on The West Wing (I even recalled that his was Relapsing-Remitting MS, even though I had no idea what that was) and in the storyline of the show, that made people upset. Bad for President Bartlet, but good for TV drama, I suppose.via GIPHY
• I knew that MS was a condition/cause that prompted people to raise money and walk 5k’s and stuff, so it had to be something considerably more serious than the flu.

That’s kind of it. I didn’t really know anything beyond that. No specifics about what MS was or what it did, or most pressingly, what all of this meant for me.

So I did what any person in my position in America in 2015 would do: I left the neurologist’s office, sat in my car, and immediately Googled “MS” on my phone. And thus began my instruction.

First, some basic anatomy. Every one of us has a brain (truly, despite some people’s behaviors that would suggest the lack of one) and a spinal cord. Together, these parts make up the central nervous system; a.k.a., the CNS; i.e., the anatomical supercomputer that keeps you and me, ya know, alive and human; ergo, something you generally don’t want to fuck with.

An anatomically impeccable rendering of the CNS

Billions of nerve cells in the brain and spinal cord (or, neurons) work together to send messages to the whole body for all the jobs that our various other parts do; we’re talking every message for every job, from “Heart, keep beating,” to “Mouth, that latte is too hot! Retreat! Retreat!” to “Nah, it’s not weird to spend your entire lunch break Googling pictures of Chris Evans in the Marvel movies.” Yeah. The CNS gets your shit done.

Now, if you looked very closely at one of those billions of neurons, you’d see a protective coating around parts of the cell. That coating is called myelin. Remember, these nerve cells are busy every second of the day sending electrical signals to each other (which, when multiplied by millions of cells, result in every body function and process you can think of), and myelin acts as insulation around the cells, ensuring that the signals travel along merrily as they’re supposed to. Yay myelin! Way to be a team player!

Node of Ranvier sounds like a location in Westeros.

We’ll get back to myelin in a second, but first, let’s talk about what a jerky jerkface disease MS is. I mean, all diseases are jerks, but MS a special breed of asshole known as an autoimmune disease*, which means the body’s own defenses, instead of going after the real enemies like viruses and harmful bacteria and other infections, turn and attack the GOOD parts in the body. Parts that are just trying to do their thing to keep the ol’ girl running (well, running and walking and breathing and digesting and giving hugs and high fives and thinking and everything else it does…).

WTF, immune system?! I thought we were on the same team here, bro!

When a person has MS, their immune system destroys myelin. Sweet, protective myelin, who never did anything except make sure those cells were all cozy so the neurological signals could get to where they’re meant to go. Nope. There goes the immune system, demyelinating nerves and wreaking havoc on the CNS (and by extension, the whole body). “Multiple sclerosis” is actually a name describing the aftermath of the autoimmune damage; sclerosis meaning “a hardening of tissue” (or, scarring…now Dr. Ullman’s comments make more sense, huh?) and multiple, of course, meaning “many.” So, multiple sclerosis essentially means “much scarring.” Ouch.

Just like exposed or uninsulated wires in the walls of your house might make your lights flicker or cause certain wall outlets not to work, demyelinated neurons (times thousands or millions) can’t send messages to the body the way they’re supposed to. But instead of lights flickering, the messed up neurological signals might cause MS sufferers to experience numbness and tingling, fatigue, problems with coordination or movement in general, cognitive impairment, even issues with bodily operations that you don’t consciously think about, such as bladder and bowel functions (are we having fun yet?).

And those are just a few possible symptoms. Because MS doesn’t affect people in all the same ways, and because lesions (areas where scar tissue has formed because of demyelination) can develop anywhere on the brain or spinal cord, every person with MS experiences the disease a little differently. Some symptoms are more common, others (like my weird neck thing) are rarer. And because there are SO many possible symptoms, the person with MS is constantly wondering if every new little twinge or pain or stumble is a new symptom caused by their disease.

Once damage has been done to the CNS, there’s not a way to repair it (…yet. Come on, science!), but there are a number of medications that are effective in slowing the progress of the disease. So there’s that.

MS, though incurable (…for now. Go, scientists, go!), is not a terminal disease. In other words, except for very rare, very aggressive cases, MS won’t kill you. But it will change your life and your lifestyle. Being at the very beginning of my MS journey, I’m learning and will continue to learn what this disease will mean for me and my life. I hope to share those experiences with people here on this blog, so stay tuned… And in the meantime, if you want to learn more about MS from people who know what they’re talking about WAY better than I do, visit www.nationalmssociety.org.

* Some experts think MS actually should be considered immune-mediated, but tomato-tomato.

I’m finding that there’s really no easy way to tell people you’ve been diagnosed with an incurable disease. Shit like that will stop a normal, human conversation dead in its tracks. And anyway, it’s nearly impossible to casually work it into a chat. No smooth segue. “Can you believe all this Trump insanity? Oh, and speaking of things that massively suck…”

So, here comes the cold water: I’ve been diagnosed with multiple sclerosis.

It’s at this point in face-to-face conversations where I usually get reactions that are some version of, “Oh no/I’m so sorry/That DOES massively suck” and the like. Then the initial expression of sympathy is often followed by a kind of uncomfortable look that says, “I’ve heard of MS, but I’m not exactly sure what it is or what this means.”

I get it. That’s the camp I was in myself until the MS Fairy decided to leave her awful treat under my pillow and I was forced to do a lot of learning really quickly. (Need a lesson yourself? It’s okay. I got you.)

It all started with me telling my doctor about a weird thing that had started happening with my neck. After that came three nervous months of expensive tests and inconclusive doctor visits, but mostly just waiting, before I was finally diagnosed in late February. At the end of all that waiting, I was just relieved to have an answer, to know what was going on (and I actually got an answer relatively quickly; from what I’ve read, some people go years without a definitive diagnosis). I think most people would agree that knowing is better than wondering. It just sucks when knowing means knowing you’re sick.

So yeah, where was I? Big life change, hard to work into conversations… Of course I have told some people. Immediate family, obviously. Some friends. Other friends have learned about my MS through the friends that I’ve told. In the first few days post-diagnosis, a few people who made the innocent mistake of asking me that should-be harmless question, “How are you doing?” found themselves caught in the unfortunate crossfire of truth and timing; I couldn’t honestly answer with, “Fine, how are you?” (I’m garbage when it comes to masking what I’m feeling. Heart, meet sleeve.) So, those people got the news, whether they really wanted it or not.

But that left a lot of people (some of whom are reading this now) whom I didn’t know how or when to tell. Social media makes it really easy to announce stuff to your wider circles of comrades, but I didn’t really want to do that. First of all, it breaks one of my Facebook Commandments , and aside from that, this isn’t exactly sharing news of an exciting new job or a bun in the oven. No photos of me biting into a mystery cupcake to reveal blue or pink frosting inside. What color frosting tells you, “Congrats! Your central nervous system is broken.” #worstcupcakeever

Which brings us here. Even before the MS diagnosis was confirmed, I was already thinking about starting a blog. I did a whole lotta contemplating during those months of waiting for a diagnosis, and I realized that, if it did end up being MS, a blog would be a good way to share information with people. As I see it, there are 3 main reasons why:

1. It’s efficient. Once I did start having the post-diagnosis conversations with people, I found myself repeating the same version of the story over and over again. Which is fine, it’s important news to share. But it also gets draining. And I’m sure I’ll still have those conversations (again, totally fine), but at least the story, any updates, my rambling thoughts and observations, etc. will also be living in one place for anyone I don’t have a chance to tell in person.
2. It lets you off the hook. Look, I get it. I have been on the receiving end of the “So, I have something to tell you…yadda yadda yadda*…[disease.]” conversations many times. And many times, I just haven’t known how to respond. This is especially true if I don’t know a lot about the revealed disease. No one likes admitting that they don’t know a lot (or anything) about something, so I’m assuming that a lot of the people in my life are in a similar boat. So, when I have the conversation with you face to face and you don’t know what to say, it’s awkward for both of us. Telling you about things here allows you to take it all in at your pace, then privately Wikipedia the shit out of MS, and then we can all get on with our lives and have a good laugh about it next time we’re at a barbecue together.
   
   (**Please don’t take my “yaddas” as me trivializing the weight of conversations like this. I’m just trying to get to the point. This post is too goddamn long already.)
3. I’m considerably better at writing than I am at actual, personal interaction. A blog does me a real solid by giving me the chance to take as long as I need to think about what I want to say rather than blurting out whatever ill-formed drivel happens to be floating around my noggin at that moment, and get it right (or right-ish). You’re welcome.

So there you have it.

I do have things to say about non-MS topics from time to time too, so I anticipate that this blog won’t end up being solely focused on my MS. I don’t plan on my life being solely focused on my MS, so why should this be? Writing is a great outlet, cheap therapy, rigorous mental exercise, and something I truly enjoy, so this endeavor will be good for me. I hope it will be good (or good-ish) for you too.