Multiple Sclerosis for Beginners

I’m not a doctor, and, if you are reading this hoping for a definitive and physiologically accurate medical description, then please look for something written by a professional.

When I was told I had got multiple sclerosis, I had absolutely no idea what it was, although I had heard the name and knew it wasn’t something you would want for Christmas.

After reading about it, I developed a picture of it that resembled the electrical wiring in a house. The house is your body, the wiring is the nervous system, that turns things on and off.

The wires in a cable, that conduct the electricity, are, in your case, carrying electrical messages from your brain. There are millions of such wires, and millions of messages travel along them every second. Just as the wires in your house have to be insulated in a plastic casing, to prevent short-circuits, explosions and fires, so your nerves are insulated in what is called the myelin sheath, for the same reason, really.

It is not completely clear at the moment, but it would seem that, in people with MS, the body’s immune system thinks this myelin sheath is an alien object. It doesn’t recognise that it is part of you, so it attacks it, for that is its job, to destroy things in your body that shouldn’t be there.

Exactly why my immune system can’t tell the difference between my myelin sheath and, say, a cancer cell or a flu virus, is not fully understood. I suspect my DNA, so maybe the electrician who wired my house was a bit of a cowboy.

Years later, I discovered my dad’s grandfather died with it (it was called Disseminated Sclerosis then), so my DNA supposition might have been right.

It didn’t help me to discover this, but it is interesting.

Some people with MS are obsessed with finding out why they got it. I’m not sure it helps to know. Maybe it’s to do with vitamin D deficiency, or a rogue gene passed down from the Vikings, or maybe it’s something coming out of our electrical sockets. I have heard all these theories seriously propounded. It doesn’t help

You’ve still got it.

When your immune system is shot to pieces, it doesn’t seem to know what it’s doing, so, after it has attacked your myelin sheath (a process known as demyelination), it then decides to repair the damage, in the way that a normal system would do. So it repairs the damage, but it leaves a scar on the myelin.

This is why people with MS have relapses and remissions. When the immune system is attacking the myelin sheath, I am having a relapse. When it repairs the damage it has itself caused, I am in remission.

Each repair job leaves another scar, and, as time wears on, the scarring becomes so bad that messages just don’t get through to the desired muscles, and things like legs and fingers stop working properly, or stop working altogether.

The attacks and repairs are unpredictable, and the effects of slow or random messaging are excitingly challenging!

But, you’ve still got it.

It has moved in to your house, like an unwanted and drug-crazed teenager, and you can’t throw it out, even though it leaves its dirty underwear on the kitchen floor and just uses you like a hotel, coming and going just as it wants to. It will eat you out of house and home.

But, try to understand it. You’ll have to put up with its loud music and untidy bedroom. You might as well learn to live with it, although you’ll never learn to love it.

Love it or not, accept it or not, know why it’s chosen you, or not, it makes no difference. You’ve still got it.

 

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About stevehobsonauthor

I am blind, and I hate it. It stinks. But life is still sweet. I have multiple sclerosis, and that stinks too, but life is still sweet. These are my musings.
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2 Responses to Multiple Sclerosis for Beginners

  1. Sonja Trbojevic says:

    Hi Steve, this is an interesting way of looking at your MS. In some ways it’s a bit like how I cope with HMS … Now that I have a label for the myriad of problems which have visited me all my life, I am able to deal with them when they flare up, without the panic I used to have, that there was something seriously wrong.
    I consider myself very lucky, in that I have always been able to function remarkably well, with pain that is tolerable, & despite the fact that I often struggle with everyday stuff, I am still able to do my art.
    As I get older, & the normal age-related things creep up on me, I sometimes feel a bit frustrated when I can’t do what I wanted to, but I guess most people feel this anyway. I take each day as it comes, without feeling guilty that I have “wasted” a day by not doing what I had planned to do.

    Like

    • Hi Sonja, tghe diagnosis label is important, I think. Some people just don’t want to know, and neurologists are of the opinion that people get worse after diagnosis because they can be overwhelmed by the horror! I felt I needed to know the identity of the enemy, and I needed to know what was going on in my body. How can you fight it if you don’t know what it is?

      Like

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