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No Bed Of Roses - The Other End of the Stethescope

by Roger MacDougall

"Although there's not much pain in it,
Multiple Sclerosis
Is no bed of roses
I know, I've lain in it".

Being at the wrong end of a stethoscope can be an unpleasant experience for the over-imaginative. Being at the wrong end of a neurologist's little rubber hammer is an experience I found to be even more trying. And when I was asked to think about peaceful scenes like a glorious summer's day at the beach , or a pastorally symphonic farmyard scene with Devon cattle lowing and barnyard fowls crowing and clucking, while I was at the receiving end of a syringe which that same neurologist was sticking into my spine, my mind, as they say, boggled. That was not a time for thinking beautiful, peaceful thoughts. That was a time for thinking cowardly, panic-stricken certainties of death and graveyards and coffins.

That man was sucking out my spinal fluid and make calculations to determine whether I had a tumour in the brain or merely an attack of some lethal neurological disease. And he was asking me to think about peaceful summer days. That man was a maniac. And a dangerous maniac.

These were my thoughts as I submitted to a diagnosis at Queen Square Hospital, just over 20 years ago. And I have never had occasion to go back on them.

Because I was terrified and helpless, I stayed with my tormenters for four years. Every so often I was taken in to have some new indignity perpetrated on myself. A transfusion of fresh blood! A course of arsenic poisoning! (True.) And then, after four years, I summoned up enough courage to leave them for good.

I had become sufficiently inured to my state of blindness and near paralysis, to be able to think more clearly about the whole wretched business and, thinking clearly, it was obvious that these learned gentlemen were stumbling about in the dark and hadn't any idea where they were going - bumping into each other, bumping into their patients, in a ludicrous game of blind man's buff. I decided that was a game I had out grown.

And that was the best decision I ever came to in my whole life, because while they are still lurching around at their pathetic little parlour game, pretending to write erudite papers on the subject of neurology, pretending to look after the unfortunate little flies who became entangled in their web, here am I, 100 percent, fit again, not cured, but stabilized as healthy as any 62-year-old with thousands of unfortunates following in my foot steps and beginning to feel the benefit.

Are these gentlemen aware of what has happened to me. Of course they are aware of what has happened to me. I've told them,and, a year ago, one of their number came to examine me.

He found vestigial traces of multiple sclerosis in some nerve located near my right heel, but not much else. He was puzzled. I could see he was puzzled. And subsequent events proved that official complacency had been somewhat shattered.

Investigations into a gluten-free diet have been set up at Manchester, Edinburgh, and Ulster. So that now when people write to the MS Society to ask what is known about my diet, the MS Society can proudly say that its possible efficacy is being tested.

And, as you might guess, this is not true. The efficacy of my diet is based on the assumption that while gluten is one of the causes, certain deficiencies are equally important. And a gluten-free diet is usually achieved through the loss of a certain amount of vitamin B which happens to be already one of the principle deficiencies. The test that is being conducted might produce negative results.

If I've written one letter to point this out, I've written 100. But communication up the stethoscope seems to be impossible. In these matters, the stethoscope is a one way instrument. It can hear the murmurings of your heart, but it seems to be totally unable to hear the shrill, urgent alarm calls of your voice.

I've been shouting up that stethoscope for more than a year now, shouting until I'm hoarse, and worse, shouting until I've become a compulsive shouter up stethoscopes.

This invokes a far from impossible picture of me running amok in a hospital, grabbing all the stethoscopes I find in use and shouting up them - first pleas for sanity and finally, no doubt, garbled messages of combined pleas and obscenity until I'm taken away, raving, and bound in a strait jacket.

Now that I've thought of it, I'm certain that's going to be my end. You see I, a lonely, unprotected layman, have taken on the Establishment. And that is an unfortunate piece of effrontery. For that, I will be punished. I am a marked man. I will be pursued by doctors and by surgeons, who will rally to the support of their colleagues, sharpen their scalpels, and join in the melee.

I have committed the unpardonable sin. I have shown their inadequacy. I'm like a man on trial for his life who has dismissed his lawyers, conducted his own case, and won a total pardon. Would he be popular with his lawyers?

Think then of how I will be treated by the medicos now that I've found the fallacy in their thinking.

I didn't recover by accident. I recovered by using logic where a doctor uses aetiology, and logic is the better weapon.

I managed to get myself sufficiently calm to take a cold, cool look at the problem and, because I am not blinded by an excess of unnecessary knowledge, I managed to see through to the solution, at least in theory.

When I put the theory into practice, it worked. Many thousands of people in 25 different countries are also putting it into practice. Few of them have been on the diet for long enough yet to see tangible results, but already 40 or 50 are feeling the benefit, some in quite a spectacular way.

There was a "Do it Yourself" craze in America when I was there last. It's a temptation to say to people, "To hell with your neurologists, join me and the 'do it yourself bunch'," but I mustn't. It would be easy of course. I've never met anyone who had a good word to say for his neurologist. Next to hangmen, bailiffs, and dentists, they must be the most unpopular professionals there are. And when I think of it, so long as he doesn't abandon his doctor, there's no harm whatsoever in a patient saying goodbye to his neurologist. None.

MS really has nothing to do with neurology or neurologists. It's an enteropathic disease. I can see a neurologist sticking syringe into me and sucking out more than my spinal fluid. But I can't go on shouting up stethoscopes till I die. If I can't make myself heard that way, I have to try elsewhere.

Though I may sound flippant, I'm in deadly earnest. I can produce chapter and verse for everything I say. And if I'm accused of giving false hope then I really will flip my lid.

That "false hope" lark is the oldest trick in the doctor's bag. Have you ever heard of anyone suffering from an incurable disease who objected to a little hope? I suffered from an incurable disease and I longed for it. I've had thousands upon thousands of letters from MS sufferers and hardly one fails to mention the ray of hope. "Even it doesn't work for me," they'll say, "how wonderful it is to be doing something that just might work, after the undiluted pessimism of the doctors and specialists."

This is standard. People would rather be trying something, anything than doing nothing. That's obvious. And what am I asking them to do? Take a healthy diet with a "crash" supplement of vitamins and minerals. You'd think I was asking them to swallow arsenic - as my specialist asked me.

The power of the Medical Profession is such that they actually make me feel guilty about telling people I've managed to recover from MS. I feel somehow that I've committed an unclean act. I'm a pariah. I should be cast out from society, with the entire General Medical Council lined up in frock coats pointing fingers of scorn at me.

Would it help matters if I made a public apology?

To whom it may concern: "I hereby solemnly promise that I will never again interfere with the inability of neurologists to cope with my MS but will be happy to remain a contented cabbage in a wheel chair unable to read or write. Sorry I can't sign. I can't even hold a pencil."

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