The ABC’s of MS

I’m not going to clutter your mind with the neurological details of MS. You can google that stuff anytime. Long and short of it, it’s a brain disorder and no one knows why it picks who it picks. The disease is different for everyone. And there is no cure. It’s hardly ever terminal. But it sure can be inconvenient.

There are four types. Again, Google for the details.  Mine started in 1981 as a clinically isolated syndrome (CIS) with symptoms coming and going without enough to make a clear diagnosis. I spent eight years in this limbo. Multiple doctor visits always resulted in hearing my anxiety attacks and vague symptoms were caused by depression or stress. So, diagnosis was a relief, finally knowing what was happening to me. By the way, I haven’t had an anxiety attack since.

I was finally diagnosed in 1988 with relapsing and remitting MS (RRMS). As I’m aging, I’m assuming I’ll move into the secondary progressive category (SPMS). Maybe I’m already there. Who knows. My exacerbating and remitting type means it can come on and then go away any time it wants. I can rest and do all the other things I’m supposed to do and it can exacerbate anyway. It’s a sly devil.

It’s also confusing as hell. On one hand I’m told how important it is to stay active and do whatever I can. Then I’m also told I have to rest and that over activity can exacerbate symptoms. And I never know for sure if I’m doing the right thing. I walk a fine line, that’s for sure.

Each person has to figure out what works best for them and it’s a puzzle. One piece of that puzzle, what I’ve come to call the ABC’s of MS, I learned quite early. In fact, I was still in the hospital with this new diagnosis when I went for my daily physical therapy session. I must have asked just the right question and Bob, this kind and very patient physical therapist, explained things in short order. He said it pretty much this way:

You’re going along and let’s say, health-wise, you’re functioning at an A level. Then there’s this event and your symptoms cause you to go down to functioning at a J level. That’s what happens when the symptoms are active. And once you go into remission, then the work begins.

You have to build yourself up. Have an exercise program. Start walking when you can and do a little more each day. Be sure to get enough rest but be as active as you can be. If you work real hard you may get back up to functioning at a D or maybe at an E. You never get all the way back to where you were before the symptoms started but things can get better.

Then you go along until the next time. Let’s say that then you go down to functioning at a J again. Once the symptoms reduce, you work really hard and you go back up to an F or a G. And that’s why it’s so important to build yourself up after each attack. If you don’t do the work, you’ll be stuck at that J level forever. Then next time symptoms appear, you’ll go down to an S. See what I mean?

In my case, it all started with numbness in my right hand between the thumb and the forefinger. As time passed, I also had numbness in my feet. As the symptoms worsened, the numbness traveled up my arm and legs. With the passage of time and with rest the symptoms receded.

I feel lucky that I’ve had such good remissions. There were times I almost forgot there was something wrong with me. But then it would come back.  Over time I noticed that not all the numbness disappeared.

Now after thirty-five years of these ups and downs, I have permanent numbness in my right hand. I still can use it but there is stiffness and loss of feeling. I drop things a lot. And I have permanent numbness in my feet. When my MS is active I can’t walk too far and my balance is poor.

Assigning a letter may seem arbitrary but it does help me compare one day, month or year with another. Maybe what’s more important is that most days I’m able to do everything I want to do. I’ve never been particularly athletic and always worked at sedentary jobs so I’m able to get along pretty well.

But there’s more to this than handling only the physical symptoms. There’s also the emotional and psychological end of things. That can be a roller coaster too and I have to navigate the down days. Once I can get past the “why me” whining, that’s where the ABC’s help. My mental attitude generally swings between an A and a D with some days going all the way down to J. But I know I can work my way back up again.

 

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1 Comment (+add yours?)

  1. Linda
    Aug 24, 2016 @ 17:53:30

    I remember this time, Karin. Great explanation of a complicated illness.

    Like

    Reply

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