I am a 41 year old man who was diagnosed with Multiple Sclerosis in May 1999. This presented both me and those around me with a lot of emotional and life issues. I have been working through these slowly. I have also done and am still doing a lot of research into the medical aspects of the disease.
All this has prompted me to put together these web pages which reflect what I have found out about the disease and what is necessary to come to terms with it. I've done this both to clarify my own thoughts and in the hope that it may be of some use to someone else out there in cyberspace.
What follows is a personal account of my experience with multiple sclerosis, it is quite long and rather self-indulgent.
MS hits many people
very badly from the outset, but it was not like that for me. MS crept up
on me slowly like a boxer dancing around an opponent, weighing him up and
then delivering a knockout punch. For many years, the course of my disease
was very benign. I hate that term. Benign is a word which implies goodness
- benign things are good things - benign diseases are not good. They are
just a little bit bad rather than really bad. As far as benign MS goes,
there is nothing good about it. In many cases, including mine, it is a
harbinger of a more malevolent condition. In the spring of 1999, I had
a relapse that knocked me down. It was the first relapse that has left
significant lasting symptoms and it was the first relapse that I could
no longer deny.
When I was 19 or
20 I had my first attack. Well, attack is a pretty strong word for it.
It was more like a gentle nudge. I thought it was weird - interesting -
even pleasant. An adolescence spent desperately trying to get high on Nigerian
pressed spinach, aerosols, mouldy bananas and the rest had taught me to
enjoy any strange sensations as highs. This was the head-tilt high. It
was a real buzz that made much of my body tingle. Odd, but nothing to bother
about - probably normal. In fact, so normal that I can't even remember
asking myself whether it might be a harbinger of something larger. Even
my hypochondria cells refused to kick in. Besides it didn't last long -
only a few seconds and then it eased up. Then I'd have to wait for a few
minutes with my head held up for the system to charge up again. Odd, interesting
and even pleasant - that was it - but not a patch on sex, drugs and rock
This time I worried. It started on the tip of the forefinger of my left hand. Not a lot really. It was like the loss of feeling in the fingers that accompanies freezing weather. Into the house and rub your hands in front of a nice warm fire and it recovers. The delicious sensation of warming up. So I dipped my finger into warm coffee but it didn't go away. I didn't like this - it was not nice. What did it mean? What did it MEAN? It spread. It went into all the fingers of my left hand and up into my arm and neck. The arm and neck muscles became weak. "A pinched nerve", declared my general practitioner. He was an old bod - I don't know where I picked him up from. He probably knew right back then. Yes, he knew all right because he referred me to a neurologist. I knew too. I knew because a short lifetime of hypochondria had prepared me for just such a disaster. Palpitations taking acid - I had a heart condition. I was a healthy young man with a heart condition. I was dying but I lived. A sebaceous cyst on my ear lobe. It was cancer. I was dying but I lived. Now paraesthesia and muscle weakness. It was that... THAT disease. One of the big three. My head turned round and around. It can't be a pinched nerve because these nerves exit from different places on the spinal cord. Oh why did I make friends with so many doctors?
The neurologist at Bristol Royal Infirmary had an arsenal of hammers, spikes and things to prod and tickle me with. His tool kit wouldn't have looked out of place in a torture chamber except that he was the master. He was the doctor. He was the consultant and he wheeled in his class of fawning students. They watched in admiration as he plied his trade. He tapped, he poked, he tickled. He found nothing. Well, he said that he found nothing, but did he know? His cure was simple. He sent me to a physiotherapist and she gave me the sacred beanbag and instructed me in the fine art of bean baggery. For a week or two I pummelled and pushed that little beanbag. It became my friend and my saviour. It worked. I was cured.
I knew nothing.
Just as before, the
symptoms were mild. This time it was my right eye. I noticed it in the
bath. By holding my hand up to the window I got a crystal clear silhouette
with my right eye closed, but with my left eye shut it was slightly distorted.
It seemed to have little "v"s touching the edge of the image with their
apexes. Soon the colours became faded, particularly red, and then the image
became blurred. When I did vigorous exercise my sight became very poor.
Now I was worried. I had seen documentaries about this sort of thing and
it matched. Looking back, I remember next to nothing about the doctor I
saw - just a vague feeling that she was a woman but I'm not even sure about
that. The doctor sent me to have a Visually Evoked Potential test which
I did, but I didn't go back for the results because of other things that
were happening in my life at the time. Beside after a few weeks, the eyesight
recovered and I could lay my hypochondria to rest for a while. And it was
a long while.
After eight years of blissful ignorance, I resolved that I had indeed been a hypochondriac. A friend who was a doctor told me that he thought that what I had experienced was probably the side effects of a migraine. I was happy with that and besides I had a life to lead. I now had a wife and kids and hadn't got time to worry about my health....
Walking down the hill from the railway station one day, I noticed that my right foot went "clack" when it landed. Soon, I discovered that I couldn't lift the foot up enough. I had to bring the whole leg up with the knee bent and flick the foot forward in one exaggerated movement to guarantee that the toe wouldn't land first and trip me up. It bothered me when I was driving as well - after a few minutes the weight of the foot would leave some power in the throttle unless I rested half the foot on the floor and pressed the accelerator by rotating the foot onto the pedal.
So if I wasn't ill,
why did I have these strange symptoms? Was I mad? Was it all in my head?
Was I psychotic? Yes, that was it, so I had to pull my mind into shape.
This was nothing and I had to treat it as such. I had to ignore it and
it would go away. And it did. It went away without me even consulting a
By now, I was working on a very technically demanding project for a bank. It took all of my time. During this period I experienced bad constipation - I just couldn't get my bowels to engage. The back up caused me stomach pains and there was a bit of blood in my stools. I went to my doctor and he referred me to a bowel specialist. As a seasoned hypochondriac, I was terrified that I had bowel cancer. As is usual for the National Health System in Britain, the appointment was for several months hence.
Shortly afterwards I had some strange contusions on my glans penis. My mind went racing - were these cancer or Karposi's Sarcoma? The hypochondria was alive and well once more. Again I went to see my doctor and he referred me to a Sexually Transmitted Diseases clinic on the grounds that these people were used to looking at genitals and he really didn't know what it was.
The doctors decided at first that they were flat warts that are a Sexually Transmitted Disease that can remain dormant for many years. This didn't do wonders for my marriage, as I'm sure you can imagine. I had been faithful all this time so where did the warts come from? My wife had the same thoughts.
They tried to freeze them off which hurt like hell, but they reappeared and I went back to the STD clinic where a smart Australian STD consultant looked at the skin around my joints and into my mouth, found some more contusions and declared that it was Lichen Planus (LP). LP is an autoimmune disease of the skin and the average age of onset is typically in the mid fifties. LP is usually associated with other autoimmune diseases, and, since I was still experiencing bad constipation, I decided that I had Ulcerative Colitis.
got better and I missed my appointment with the bowel specialist. I figured
that, if it were cancer, then I'd be dead already. That's not actually
true, bowel cancer can take several years to kill, but, since cancer wasn't
the cause, I guess I have been lucky. Bad form, though, to skip a hospital
appointment - resources in the NHS are limited and you shouldn't waste
Again I had forgotten my mild and fleeting ailments. The worst I had suffered had been a little numbness, a little muscle weakness and constipation and a short period of disturbed eyesight but only in one eye. During most of the preceding 20 years I had on and off sensations of electrical buzzing in my body if I lowered my head but I'd grown completely used to it - it seemed normal.
On my last day of ignorance I was putting together some bunk beds that we had bought for the children. There were a lot of screws to put in. My right hand became very blistered. The next morning it was very numb. It got number and number throughout the day. My right hip and my stomach also went numb. I was terrified. The next day things were even worse and a strange nausea set in. Things deteriorated gradually over the next week. My nausea became so severe to the point that I was vomiting regularly and my sense balance was minimal. I had to hold on to walls to stay vertical. My feet were numb and various muscles in my legs and my left arm were becoming weak. I was dragging my right foot and losing the sight in my right eye again. I was experiencing urinary hesitancy, constipation and bad acid reflux. I became housebound.
At night I lay in my spinning bed with sick bowl to hand and in agony from the heartburn. I was having a major health crisis. My wife, who was pregnant and within a week of her due date, was in no state for her husband having a health crisis. The timing of the attack could not have been worse. I went to the doctor who gave me a neurological examination and referred me to a neurologist.
On the baby's due date I had a complete collapse. My balance went completely - I couldn't even stand through a combination of vertigo and muscle weakness. My wife had to take me to hospital because I was vomiting every three minutes. We spent the night there and they discharged me in the morning stocked up with all kinds of pills. I had no idea what was wrong but I was no better, save for the vomiting which was eased by anti emetic pills called Proclorperazine.
A week later I went to the neurologist and she went through my medical history with me. I told her about all the strange symptoms that I had had in the past. The neurologist listened attentively and then gave me a full neurological examination. She highlighted a number of problems with my body. She was very good. She asked me what I thought I had. What a cop out! I should have said "you tell me!" but instead I calmly replied that I was worried that it was multiple sclerosis. She said that she thought it probably was but that further tests were needed to confirm the diagnosis.
I was in shock - I couldn't believe what I was hearing - my mind was going "wheelchair, wheelchair, wheelchair". She asked if I wanted to know about the diagnosis for certain. I said that I didn't really know but to book me in for the tests and I'd decide about them later.
So even hypochondriacs get sick. Wait up a minute! I wasn't a hypochondriac any more! Here was someone telling me "Yes, your symptoms are real and you're not psychotic". I had swapped a mental illness for a physical one.
I went home like an automaton - I just couldn't absorb it. I needed support. I didn't know what to do. Doctors should never let any one just walk out of consulting rooms after serious diagnoses even if the patient appears to be levelheaded about it.
Now that I knew,
it all fell into place. Some symptoms, such as urinary hesitancy and the
buzzing in my body when I tilted my head forward (L'Hermittes sign), had
been with me for a long time. I hadn't pursued a diagnosis as vigorously
as I might have. In some ways, I didn't want to know. Now for the first
time, I had been hit badly enough by the disease to the extent that I had
trouble walking. Now denial was no longer an option.
I found a newsgroup called alt.support.mult-sclerosis on the Internet and heard the stories of other people with MS. They had the same condition that I had and mostly they were much worse off with it than I was. At least I felt less isolated and lonely. I spent the summer burying myself in my disease and in the newsgroup. I read Barbara Webster's "All of a piece" and started the long journey towards acceptance. My wife had gone to Spain with the children and I hardly spoke face to face with anyone all summer.
So what did I have? Well, physically speaking, I had lousy balance and veered about like a drunkard, I could walk fine for a short distance but then my nerves started to pack in and I started to limp like an old man with war wounds, I had loads of areas of numbness all over my body, I was clumsy, the vision in my right eye was poor, I had constipation, urinary hesitancy, chronic fatigue, muscle spasms and cramps. Worst of all, none of these symptoms seemed to remit. I checked them every morning and regularly throughout the day. At times, they seemed better and at times they seemed worse. One morning much of the numbness felt better and I rang my mother and sister to tell them the good news. Then I rang a friend who also has MS and she said, "Great, but lets see how it is this evening". Sure enough, the numbness was back by the evening and now I doubt whether it was even better that morning or whether I'd just wanted to believe that it was.
How can you feel okay about having MS? How can you feel okay about having a disease that will get worse and worse, biting off more and more bits of you until you are forced out of the workplace and quite possibly into a wheelchair? It may even shorten your life.
Most people's first response is denial but I had been through that for years. Now the denial was over. When I first wrote this I said that I seemed to miss out the anger phase and I how I never really felt "how unfair".
Looking back, I see that I had forgotten. This may seem strange - how can you forget how you felt about such a major event in your life? I think that this reflects on an ability that I have to forget about painful episodes. The reality was that I hated the disease, I dreaded it and I wished that it would go away. I really did feel that it was unfair. I felt blighted, but such feelings gradually went away - I can't really explain why - perhaps it was reading about so many people who were so much worse off than I.
My first response was to find out what MS was all about. I compulsively read about the disease on the Internet, in medical textbooks and in pamphlets. I searched MedLine for details and potential cures and new treatments that immunologists and neurologists were researching. I became an expert.
But what a morbid subject!
I became very depressed. There is evidence that MS can cause endogenous clinical depression but this was not what I had. I was depressed because I had a serious disease and I was losing my wife, at least partially, because of that. Who wouldn't be depressed? Uncertainty loomed over me. What would happen to my health? How long would I be able to go on working? Would I wind up in a wheelchair? How would I ever find another partner? Where would I live? How often would I see the kids?
I got a counsellor but she had no idea. She suggested the kind of things that you would say to a physically healthy person that is dealing with the everyday problems of life.
I resolved to look the disease right in the eyes. Stare deep into the void. I knew that I couldn't fight the thing. It's not like cancer or financial problems where you can grit your teeth and fight to the bitter end - you may win and you may lose but you go down fighting. With MS, you would only lose. There is no cure. No one has ever beaten MS in a straight fight no matter who claims what. It can be kind and can suddenly leave you, but you cannot defeat it.
For me, the key was, though I couldn't beat MS, it wouldn't beat me either. I'm unlikely to die from MS, at least any time soon. Some famous person with Parkinson's disease once said that he wouldn't die from it but he would die with it. That seemed to me to be how to treat MS. It's here to stay but it's not the end by any means. It's not even the beginning of the end. My life can go on. Maybe things have to be a little different, but they will go on nonetheless. I could be happy again, I could laugh again, hell, I may even find love again!
The key seemed to be to live day by day, hour by hour and enjoy what I had and not look to the future. This is true for everyone, irrespective of their state of health - life is necessarily uncertain. Death and probably disease as well, will claim us all. We are all only young and fit for a short time. The young and fit seem to know this and don't dwell on their own deaths. So how is it different for someone with a chronic disease? It's different because we can feel that fitness draining away - we can measure its progress. One day we can walk up the hill and the next day we can't. So don't walk up the hill then - do something else! Walking up the hill isn't everything and it wasn't everything when we could do it.
I resolved to enjoy what I could do and accept my limitations. When I get very tired, I rest. There's no point pushing myself, because I will only suffer in the end.
What do I do best? Fool about on computers. Am I ever lucky with that one! That occupation can withstand a lot of physical deficits. I should worry about the mental ones, but that would be counter to the whole acceptance process that I've developed.
What about the next
relapse? What kind of shape will I be in after that? Who can say? Who can
say how I'll deal with that? This was the first relapse that has left me
with any appreciable deficits - maybe the next one will leave me much worse
off and maybe I'll completely remit from it. Maybe I'll go secondary progressive
soon. Maybe I will, but I'll deal with that then. For now, this is how
I am and I'll live the life that my physical state allows me.
Since I wrote this, I have had a minor relapse. It has affected the left-hand side of my face, the left-hand side of my tongue, my bowels and my right leg. The bowels are the worst bit because my back passage is numb and pretty weak. I haven't been caught short yet but I've come close.
I went to see a neurologist
and he asked me to go through my symptoms. There seem to be too many to
enumerate but most are still mild. I am lucky. I've had MS for 22 years
and I can still walk.