So I met with my neurologist on Tuesday and there were some surprises. We talked for a long time about what we can see in the MRI and what we can’t. Like the future.
He dropped some big words and some percentages and I nodded a lot. Technically, I have CIS, or “Clinically Isolated Syndrome” and you’re right that is a ridiculous name and could in reality refer to anything, but actually means “Not MS, But Could Be.”
Onto the three clouds.
Cloud one: This develops into MS. I have a lot going for me that it won’t, but 15% that it will is the number if you want one.
Cloud Two: Cancer. Did you freak out a little there? Because I have been doing that, albeit silently for two days now. Probability, pretty low. The plaque we can see on the MRI needs to be monitored for any signs of growth, indicating, duh, cancer. It seems the MRI machine and I will tango again in November. And by “tango”, I mean “twitch nervously and cry in that damn tiny tube.”
Cloud Three: Some sort of cervical spine disc surgery IF the tiny spot where the spine is almost kissing the nerve budges at all. IF. My neurologist asked me “Do you sky-dive?” Uh, no. “Bungee-Jump?” Nope. “Kick box or get kicked in the head ever?” No. “You’ll probably be okay.” (Have I mentioned that I like him?) Although he did say that 20 years down the line it might be more of a problem. Old age is a bitch.
Do you see the low probabilities and lots of “maybes”? Because there are. In a positive frame of mind, you might look at this and think “home free!” None of this makes mention of what I am right now. Healthy. Strong. Vibrant with flowing locks and ripped abs. Er, I mean, Positive and Hopeful. Supported.
What would you do if you knew about those clouds on the horizon? Probably nothing, right? Something terrible could happen to anyone and any time. We know this and yet don’t keep in in our minds. I sunk down the last two days and thought a lot about, well, nothing. When the first episode of numbness began in December and no one knew exactly what we were seeing yet, I thought about the future a lot. How to prepare my body, my life, my kids. Now that we know more, the future looks oddly blank.
On the way to a spinal tap that would give us more answers, my husband hugged me for a long time in the driveway and said, “Your odds are just the same as everyone else. Okay, maybe a little bit worse, but you’ll be fine. We’ll be fine.” He’s right. It’s still true. Then we plotted to steal a hospital wheel-chair, just in case.
There are some things I could do at this point. Some in the medical community think that the moment you are diagnosed with CIS, you start treating for full blown multiple sclerosis. It helps slow the progression of the disease. In some cases, like mine, that is a lot of expense and misery (think daily injections and side effects ranging from rare but horrible to reduced immune function and/or plain old diarrhea.) We’ll skip the Expensive Preventive Misery for now. The other thing I could do has to do with diet. There are anti-inflammatory diets out there that people with reduced immune function swear by. And that might be what I’m dealing with—a disorderly immune response. I could also plan for the chance of debilitation. I don’t know if I’m ready to do that. I have to keep in mind that planning for the worst doesn’t make the worst hove into being. It just makes me prepared.
No one can truly say the cause behind nerve demyelination. For some of us though, perhaps it is just the impetus to look long and hard at our lives and be given the chance to truly wake up and live while we can, to really look at the lush life we live of family, safety and luxury at every turn.
Screw those three black clouds. It’s pretty sunny here right now.