What's Really Going on in My Brain

I finally have a good explanation for what's been going on in my brain and more importantly, an even better description of what I'm doing to treat it. As I often say, I'm not a doctor (nor do I play one on TV). This is one laywoman's description of M.S. and of my personal treatment with Copaxone. It's the best way yet that I've been able to demystify my disease while coloring a simple explanation of how I'm battling it. Keep in mind that no two patients with M.S. are the same.

Let's begin with you - push back from your computer screen and get comfortable. Take both of your hands and put them up in the air, with your fingers extended. Turn your palms inward and pretend to hold a medium sized melon between your fingers. The melon represents my brain; your fingers represent the nerves surrounding my brain. Ouch! Don't squeeze so hard!

Actually, this is rather enjoyable to me. I'm sitting here picturing in my mind's eye, my hundreds of readers, all leaning back in desk chairs and on couch cushions, arms outstretched and holding my proverbial brain. Don't stop yet. You need the visual.

The melon, my brain (and yours, too, really), is surrounded by nerves (your fingers). Now, look at your fingers and pretend there are cuts on them. Some may be deep, and others may be right on the top of the skin. Imagine the ends of a couple of your fingertips being exposed. Those imaginary cuts on your fingers represent the demyelination of my nerves. The skin on your fingers equates to the myelin that surrounds my nerve endings (yours, too). Your exposed fingertips represent my exposed nerve endings. Now, imagine if pieces of your damaged skin from your fingers were to scar up on the melon that you're squeezing. That scarring would represent the lesions (i.e. sclerosis) on my brain. Because these lesions are many in number, we call them "multiples" (i.e. multiple sclerosis).

If your arms are tired, you can put them down. My brain is starting to ache from all the massaging anyway.

In M.S., the exposed nerves and nerve endings prove to be problematic. They stop the appropriate messages and commands from getting to the right places. (You don't have to think that you want to lift your right arm, do you? Your brain just does what's necessary to move it for you. That's the power of a brain that is sending and receiving messages appropriately). Where the lesions are sitting on the brain is important. It's not always the number of lesions, but rather the locations that cause the symptoms to happen. I guess the old adage is true: location...location...location. I've had lesions on my brain for many years. I went from being completely asymptomatic, to seeing some "silent symptoms", to inflammatory attacks that come and go (i.e. Relapsing-Remitting M.S.). It's a progressive disease.

So, my nerves aren't sending messages correctly, the myelin (like the skin covering your fingers) has been torn away from my nerves, and lesions now sit on my brain and even on my spinal cord. On top of all of this, my immune system continues to attack my brain instead of the "normal person" diseases encountered in my body. That's how the myelin became damaged in the first place. For years, my immune system was just eating and eating away at my nerves. Future attacks by my immune system will cause more demyelinations and more lesions. Quite a vicious circle. So, here is where the treatment comes into play.