Remission?

I have Multiple Sclerosis.

Not surprising. I’m writing a blog partially dedicated to the topic.

The one thing we know for sure about MS is that no one knows anything for sure about MS. (Thus, the reason I call it the Sergeant Schultz disease.) My condition is quite good, compared to many of my friends. In fact, my physical condition has prompted two different people in one week to ask me: “Are you sure you have MS?”

My neurologist, MRI’s, and body agree that I do. That’s good enough for me.

Why have I been spared so many of the disease’s ravages while others have not? Again, who knows? Not being on any of the MS meds, I chalk it up to the grace of God and my PB&J therapy. Like any other MS treatment, it’s not guaranteed to work for everyone, but I swear by it. I used to swear at my meds.

Other people have asked me a most puzzling question:

“Are you in remission?”

I don’t like that question because I don’t think there’s a good answer, kind of like that old sick joke, asking a guy if he’s stopped beating his wife. Any answer gets me in trouble. The question is based on the incorrect assumption that MS has a state of potentially permanent remission. It doesn’t.

This is understandable because of the unfortunate terminology adopted to describe the different “types” of MS. One of those labels, Relapsing-remitting MS (RRMS), seems to imply a permanent state of remission, but it’s different than, say, cancer. When a cancer patient says she’s in remission, that’s usually cause for rejoicing. Not so much with MS. The remitting state is usually just a rest stop between relapses, attacks, exacerbations, setbacks… choose your favorite term. That sword is always hanging over our heads, no matter what stage we’re at. (Admittedly, cancer patients in remission suffer the same uncertainty.) I might be doing well today, but I could be flat on my back tomorrow. It’s happened before.

There used to be a label called “Benign MS”, a class of the disease characterized by a remission-like lack of progression or relapses over a long period. That led to people thinking they didn’t need to buy any MS drugs and we couldn’t have that, could we? Yet, there are many people out there who have had a single minor MS attack that led to no further attacks or progression over the next decades. Are they in “remission”?

Let’s face it: It’s a crap shoot whether you’re benign, RRMS, or progressive. Drugs may or may not work; not taking drugs may or may not work.

As I said, I don’t like the question. And I don’t like the disease. Neither has good answers.

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About rickconti

It's not about me, remember?
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