Monday, August 14, 2006

So what's MS, anyway?

I have no idea if anyone reads this blog (but hell, I'm old enough to be talking to myself much of the time, right?) or if the folks who read it already know more than they want to know about Multiple Sclerosis, but just in case...

MS is an incurable disease of the Central Nervous System (CNS), as in the brain and spinal cord. No one really knows what causes MS (there are lots of theories, but none have been proven conclusively); as a result, no one has been able to find a cure for the disease. There are lots of treatments, though, ranging from steroids (can I tell you how much I HATE steroids?) to stop an 'exacerbation', to five different injections that slow the progression of the disease, to dozens of meds that treat the wide range of symptoms that accompany the disease. I opted for doing nothing (other than covering my ears and saying "La, la, la") for over a decade after I was diagnosed, and then I had my own little "exacerbation" in the spring of 2001, at which point I was ready to try ANYTHING to feel just a little bit better.

An "exacerbation" (or flare-up or relapse) describes a period of time when one's symptoms get worse (I have what's called 'relapsing/remitting' MS, which means that I experience periods of time when things get worse and then the symptoms abate to one degree or another). No one can predict when a flare-up will occur, or when the symptoms will abate. Hell, no one can predict much of anything about this disease; it's a little like having your life turned into a weird, sick horror movie, where every door might lead into a room filled with monsters and pain.

So in April, 2001, I turned into a kind of walking test tube, taking meds morning and night, and getting stuck with a 1 1/4" needle once a week, in the hope that this experience might spare me continued major damage to my CNS. The thing is, I have no idea whether this medication is helping or not, since many people with MS will experience a flare-up, go into remission, and stay there for a long time -- without the benefit of an obscenely expensive medication that requires having a needle stuck into a muscle once a week. Is the medication working? Beats the hell out of me, but I'm not enough of a gambler (given how few chips I have left these days) to stop taking it, so we continue with the once-a-week shot.

Anyway, back to MS...

Nerves are covered with a fatty substance called myelin that helps conduct impulses along the nerves (think of an electrical wire and its coating). When you have MS, this myelin coating is damaged by your very own immune system -- your body attacks the myelin coating as if it were a virus or bacteria, and kills it, very effectively. Once the myelin coating has been damaged, impulses that used to work just fine suddenly don't work right anymore. Symptoms very wildly, depending on the part of the CNS that has been damaged. Some people have optic nerve damage. Others have problems with incontinence. Others (like me) have problems with balance and walking, and (the worst of all, in my experience) unbelievable fatigue.

I'm not talking fatigue as in "Man, I'm really tired. I think I'll take a quick break and then go back to climbing Anapurna." I'm talking fatigue as in "If I don't lie down this instant, I'm going to fall over and not be able to get up." Or as in "Shit. I'm driving 70 miles an hour in the fast lane on 1o1, and I'm suddenly too tired and dizzy to keep my foot on the accelerator. I gotta get off the road - NOW!!"

A friend of mine who has MS describes MS-fatigue as 'like sinking into quicksand'. For me, it's like having a thick, dark curtain descend in my head, one that makes anything other than rest or sleep impossible. Whatever analogy you use, MS fatigue makes any semblence of a 'normal' life almost impossible.

Plans? Calendars? Appointments? It is to laugh!

If nothing else shows how little control we human have over our lives, MS does.

More later...

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