I Have MS: What That Means And How It Affects Me

March is Multiple Sclerosis Awareness Month. So it seems appropriate now to tell you the story of how, the summer of 2004, everything in my life changed.I was working overnights to get my way through college. I was sitting and doing some homework (it was allowed!) when I felt something that made me think my foot had fallen asleep. So, I decided it was break time. I got up, walked around, did a little dusting...and my foot didn't wake up. In fact, that feeling spread slowly for the next two to three hours. It started with my foot, moved up to my leg, and eventually the entire left side of my body felt like pins and needles.  Even my face and scalp had it. It was constant, and it hurt like nothing I'd felt up to then.

I thought maybe I'd pinched something, or that maybe I'd just sat wrong or something, so I did what every kid in their twenties does - Ignored it. After about a week, though, it wasn't going away. I did the next thing every kid in their twenties does - I called my mom, who immediately made me call my family doctor.

He wasn't too sure what was going on, and it was hard to describe to him some of it, because it was starting to go away. So he put me on what I thought of at the time as a "brain pill" and it was supposed to help if I did indeed pinch a nerve. He ordered some MRIs done. After they did one of my head and neck, we talked a little more about my symptoms, which were coming and going at this point.

He sat me down, and told me I needed to see a Neurologist, because he thought I had Multiple Sclerosis.  I didn't really know what to do or say or how to react to that. I didn't really even know what it was. I went home before I went back to Warrensburg and told my mom.

She cried.

That's when I got scared.

So, I went to the brain doctor, he did more tests, and diagnosed me. He also explained to me, slowly and simply, what MS is. He used an analogy of nerves in your body compared to electrical wires, like these.

He explained that Multiple Sclerosis is a disease of the nervous system. For some reason they can't understand, some people's immune system attacks the nerves throughout the body. The immune system attacks the protective covering of the nerves, like the plastic covering the wires, exposing them. When those nerves are exposed, it's called a sclerosis. If you have several of those throughout your spinal cord... that's MS.

It affects each person who has it differently, because the areas that are exposed are in different areas of the spinal cord, or in the brain, affecting different areas of function. The damage to the nerve stops signals from going to the part of the body that bit controls. For some people, that means they can't walk, but for others, it might not be an outwardly obvious symptom. There are several different kind of MS:

• Relapsing-Remitting MS (RRMS)
• Secondary-Progressive MS (SPMS)
• Primary-Progressive MS (PPMS)
• Progressive-Relapsing MS (PRMS)

For me, I've been pretty lucky. I have the most mild form, RRMS. For the last twelve years that I've been diagnosed, I've never had an attack or "exacerbation" like the first one. I've been on a weekly muscle injection since pretty much the beginning, and it acts to put the material that the immune system attacks, the myelin, back. It doesn't stop the immune system from attacking, but it helps to lesser the damage.

A nurse had to come from the pharmaceutical company to come and show me and my mom how to inject the medicine. It used to be a huge needle - maybe two inches long - that you had to jab into your leg or your arm. It took me a while to work up the courage to do it, and both me and mom were crying. But I did it, and it was fine, and mom about screamed her head off. But, now it's easy and comes in something kind of looking like an epi pen.

I also learned about health care. This weekly shot... is expensive, to say the least. If I were to pay for it out of pocket it would cost over $10k a year. I'm lucky to have a decent insurance, and the pharmaceutical company has a program to help people who can't afford the difference.

I do have little issues that happen every day - like sometimes I'll read the wrong word or switch letters, or my vision will get a little murky. You can imagine how that would kind of be a little weird for someone in radio. Saying the wrong thing on the air... yeah. I do that a lot. I push the wrong button sometimes, because I just think I see the right one. But if you were to look at me, you would never know I have this condition.

I need to stay cool - the heat can bring on an attack. I need to get plenty of sleep, because fatigue can worsen with little to no provocation. But for my every day life, it's pretty normal. I say stupid stuff every now and then, my memory isn't what it used to be but it's still there, and I walk just fine. I do worry a little about the future sometimes. But the way I see it, I'm almost 40 now - I've done pretty well so far, and if I keep it up, there shouldn't be too much reason for me to continue to do well. Sure, tomorrow I could be paralyzed, and never see it coming. But I can't live my life in fear of that. I can only go forward, and wait for what could or couldn't happen. And hey, it means I have something in common with Richard Pryor AND Annette Funicello.

Anyway, thanks for reading this if you did. I hope that if you know someone in your life that MS, you'll share this and get their input. Sometimes people don't want to talk about their MS, but sometimes that's all you can do.  Do you have any "invisible" conditions you'd like to shed some light on? If you would like some more information about MS or information how to help, go to The MS Society page.

Injectingly yours,
Behka