Sunday, November 11, 2007

Multiple Sclerosis - Year One

It's been one year now since I found out I have MS. It's the strangest thing in the world hearing your doctor tell you that you have an incurable disease. As I've said before, I wasn't really surprised. My symptoms were strong and I knew there was something wrong. I expected the worse. Still, when he said, "Shane, you have multiple sclerosis," I sat in shock for a moment, unsure what to say.

My first thought was, this changes everything. My next was, no, it doesn't. I could have let this disease change my life, but I was determined to not let it get the best of me. I've been blessed in that I was diagnosed very early. Many people go years before their doctor figures out what it wrong. Being that it is so early, the MS has not progressed enough to give me any noticeable signs. In fact, other than fatigue and susceptibility to cold, I don't feel any different.

I have also been very lucky in that there just happens to be a study going on right now for MS drugs. I met the qualifications and so I signed up. The study is testing whether Copaxone and Avonex work better together rather than individually. Both drugs are already tested and proven. There are three groups in the study, two get one drug and a placebo, and the third group gets both drugs. Obviously, I have no idea which group I am in, but no matter which I am getting something. Because I am in the study the drugs are free. If they weren't, I'm not sure I would be able to take either. At my last appointment, the study coordinator told me she had just checked the market price for the drugs and they were both $1800 for a one-month supply. $1800! I have great insurance through the hospital, but I don't think I'd be able to afford either of these.

The shot I take weekly, Avonex (or placebo), is not much fun. For the first month or so, I would have flu-like symptoms for up to 24 hours after I took the shot. I felt horrible. My body has adapted to it, though, and it is not as bad now. I take the shot on Saturday night and typically until around dinner time on Sunday, I fell a general malaise. Some days are better than others, but I don't usually feel really good on Sundays. The daily injection, Copaxone (or placebo), is much nicer in this regard in that the only side-effects I get are occasional redness and itching at the injection site.

I struggled with how to tell people at first. I debated keeping it to myself and not telling anyone. I didn't want anyone's pity, nor did I want anybody's first thought of me to be "He has MS." In the end, I decided I didn't care what people thought and just told friends and family and work. My Mom knew something was wrong because she had seen me stumbling during my flare-up last summer and so I probably couldn't have kept it from her anyway. Reactions were, of course, mixed with lots of tears and disbelief. Overall, though, everyone was very supportive.

Overall, though, it has been a strange experience. Other than my initial flare-up last July and August and a minor flare-up in February, I have no major signs of the disease. I still feel like the same person I was before I was diagnosed. Not that I would be different if the disease was progressing more rapidly, but it would have more of an impact on my life. As it is, I can still run around and do everything I could before. I am very lucky in that regard. I know that the disease is going to progress and I will eventually become limited physically. I don't sit around praying for a cure. If one comes, great. If not, I know I will manage just fine. That's how I roll.


Mom said...

I, also, know that you will manage just fine and that's how I roll!

Captain Noble said...

You can't "roll," Mom. You're a mom.

-j- said...

Happy anniversary...may there be many more quality anniversaries to come.


Mom said...

Before I was a "mom", I knew how to roll!

Captain Noble said...

We all know there was no "before Mom." That's what you've always been.