The story so far…

My saga started on a Saturday in late February, when I had a dizzy spell in the grocery store and saw this big explosion of light in front of my face. Once I got my balance, I went on my merry way. The next morning, I realized that my left eye was blurry. Quite blurry. I’ve been quite proud of my 20/20 vision, so this was a noticeable inconvenience, especially when it started to hurt. Over the course of the next few days, the vision in my left eye kept fading more and more, as I started my Local Tour of Doctor’s Offices. My primary care physician sent me to the opthalmologist, who diagnosed optic neuritis and scheduled an appointment with a neurologist.

When I hit the Internet, I learned that quite a large percentage of people who have optic neuritis – more than 50% – either have multiple sclerosis or will be diagnosed with it within 5 years. What the hell? Me? A relatively healthy 34-year-old has MS? I panicked. Then, over the course of the next few weeks, I read anything and everything I could about MS.

I also took lots of tests. Blood tests, visual evoked potentials tests…and the dreaded MRI. I tried to be a big girl and get through it without drugs (bad move) and ended up freaking in the MRI tube on the first try. The second try was successful, thanks to Xanax and Valium. So much for being brave. I had to be in that @*(%@#^% tube for almost 40 minutes, so that they could take pictures of my brain with and without dye injected. As I left, I pointed to the screen and said, “This is your brain. This is your brain on dye. Any questions?”

The questions were answered the next day. Caesar was right, beware the ides of March. Because on March 15, 2002, I learned that I had MS.

I also learned that I wasn’t going to die from this illness. It could shorten my life span by a couple of years, but it probably wouldn’t kill me. After hearing of my post-MRI meal of chili dogs and baklava, my neurologist had plenty of ideas on what would kill me before MS played a part.

I also learned that the stereotypical image of an MS patient as someone debilitated and in a wheelchair is not the more common picture of MS. Yes, 25% percent of people with MS may need to use a wheelchair, but that still means the vast majority do not. As I’ve been meeting more and more people with MS, I’ve been learning that there are a number of people managing this chronic illness. They have MS, but it’s just something that needs to be managed. It doesn’t control their lives.

So where am I now?

I’m dealing with the joys of insurance companies, doctor’s offices, and drug companies, trying to get started on one of the wonderful medicines available to people with relapsing-remitting MS. Hopefully, I’ll be reporting soon on my first experiences with Avonex.

I’ve learned first-hand that heat can temporarily bring on symptoms. Twice I’ve experienced numbness in my right leg when I’ve gotten too hot, and I’ve gotten fatigued a few more times than that. The symptoms go away quickly enough, once I’ve gotten myself into a cool environment and rested for a little while.

I’m also still working full-time and keeping up a very busy life. I refuse to let this illness become who I am. Yes, it’s a part of me, but just a part. There’s a whole lot more that I have to offer than that.