Monday, August 11, 2008

I don't mean to be a downer but I've got an incurable disease.

I have Relapsing Remitting Multiple Sclerosis.
I was diagnosed in April of 2005.
I had one relapse that summer.
I have just started my second.
Today I started a course of intervenous steroids in hopes of staving it off.

I can hear you now, "oh wow, Ben, I had no idea. You look so healthy. You're so thin and handsome. I mean if you weren't married I...."
Well I get the idea, and I appreciate the thoughts, however it is true. I have MS. I have had it for a long time, longer than any doctor seems to be willing to say. While I don't keep my condition a secret, it is often times not a good conversation starter. It sorta kills a mood.

"How are you?"
"I've got an incurable disease."
"Oh..."

See what I mean? Just doesn't leave a lot of room for exposition. So sometimes it gets pushed under the carpet, and people who should be in the know aren't. It's nothing personal, I'm really just not trying to hog the conversation.

So eat it, I got an incurable disease. Wanna fight about it. Figures you pick on the crippled guy.

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So I guess first thing is first, some who are reading may not be aware of what Relapsing Remitting Multiple Sclerosis is. So here is a quick overview.

From the National Multiple Sclerosis Society web page.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

There are four different types of MS. I have the most common.

  • Relapsing-Remitting MS
    People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

The long and short of it is this: My anti-bodies have freaked out. As anybody my anti-bodies fight off the standard flu, cold, or run of the mill sickness. However my anti-bodies are currently on a seek and destroy mission for anything that looks like my Central Nervous System. No one knows why and there is no cure. This is a problem.

3 comments:

Anonymous said...

Ben thank you for explaining your illness in this blog. I would like you to know I am here for anything that you think I could do for you now or in the future. I hope and prayer that you go into remission again soon with this next treatment. I love you , my daughter and my two most beautiful adorable grandsons and there is nothing that I would not do for you or your family. Please ask. I hope and prayer that I would be able to see your needs myself so you would not have to ask.Please feel better . Love, Regina

LISA EMRICH said...

Woo Hoo!! You went over three years between relapses. That's pretty cool.

You probably can figure, I too have MS. I too have an MS Blog. Feel free to swing by Brass and Ivory any time.

I also write at Health Central where we've got a budding community growing.

It's nice to meet you (saw your comment left at BrainCheese).

Lisa

pUNKrOCKfairy said...

"So eat it, I got an incurable disease. Wanna fight about it. Figures you pick on the crippled guy."

Dude! So funny! I've tried this same tongue-in-cheek method of breaking the ice when telling friends about my MS, and it always starts out with them laughing with me. And then inevitably they want to know more and the conversation gets heavy and dour. Sucks!

I want to tell them, "Most of the time I think it's FUNNY when I trip over nothing! I think it's FUNNY when I can't get out of the bath on my own steam. I even thought it was FUNNY when I fell in the shower and my husband came in and yelled at me, "What the hell is wrong with you!" (I wasn't seriously injured and that's just his reaction to being worried about me. He means it the best possible way.) Somehow the humor of the situation doesn't seem to translate to the unafflicted. Really, we could all cry all day, but isn't it more fun to just shake your head and laugh?

Julie

PS- I like your blog. Keep writing.