Long before my MS diagnosis, my body had been giving me clues that something wasn’t quite right. The problem was that I didn’t know they were clues.

As a child, I was unusually sensitive to extremes of both heat and cold. Later came episodes of exhaustion, peculiar sensations in my arms, a numb face and, eventually, weakness that I could no longer dismiss.

None of these things arrived carrying a little sign saying multiple sclerosis. Each seemed to be an isolated incident with a perfectly reasonable explanation — or at least one I could invent.

This is not an attempt to diagnose my younger self with hindsight. It is simply the story of living with unexplained symptoms before MS entered my vocabulary and how apparently unrelated events looked rather different once I knew more.

The Swimming Race I Never Forgot

In my youth, I was active. I enjoyed swimming, cross-country running and gymnastics, and I swam competitively for my school.

Front crawl — or freestyle — was my strongest stroke, although I wasn’t bad at backstroke either. Good enough, in fact, to be selected to represent the school in the 100-metre backstroke at an inter-school championship at the Commonwealth Pool in Edinburgh.

I remember being in lane eight, one of the outside lanes.

The race started well. I swam hard and reached the turn in second place. Then something happened.

I hit the wall.

Not the tiled one at the end of the pool. I hit the proverbial wall where my stamina simply disappeared.

When My Energy Suddenly Vanished

The second length was a nightmare.

I had nothing left. My arms suddenly felt as though they belonged to somebody else, and lifting them clear of the water became an enormous effort. From challenging near the front of the race, I dropped backwards through the field and eventually finished last by a considerable distance.

At the time, I had no reason to think there was anything particularly significant about it. Athletes tire. Young swimmers sometimes set off too quickly. Perhaps I had simply overdone the first length.

So that was where the incident remained: an embarrassing swimming race and nothing more.

Decades later, fatigue would become a much more familiar companion. But I cannot know whether that afternoon in Edinburgh had anything whatsoever to do with MS.

That distinction matters to me. Looking back at the first signs of MS does not mean rewriting every childhood mishap as an MS symptom.

The Mystery of My Cold and Itchy Arms

Years later, I developed a strange problem with my forearms.

Sometimes they felt cold and numb. At other times, they became incredibly itchy. There was no obvious reason for either sensation, but I came up with an explanation that seemed perfectly logical to me.

I had a trapped nerve in my back.

There was just one small problem with my diagnosis: I wasn’t a doctor.

Nevertheless, I became sufficiently convinced to visit a local chiropractor who had a good reputation for dealing with back problems.

He was also something of an alternative practitioner.

Enter the Pendulum

His clientele wasn’t restricted to humans. As I understood it, his services were sometimes required around the world to attend valuable animals — prize pigs, thoroughbred horses and stud rams among them.

Fortunately, my trapped nerve was considerably more local. No international flight was necessary.

Then out came his pendulum.

Yes, my chiropractor was also a pain diviner.

After an investigation involving said pendulum, he agreed with my theory that I had a trapped nerve and proceeded to massage my back.

I had gone looking for an explanation and found one that made sense to me at the time. The possibility of MS never crossed my mind.

Numbness, tingling and other altered sensations are among the many symptoms associated with MS, but they can have other causes too. Both the MS Society’s overview of MS signs and symptoms and WebMD’s guide to MS symptoms make that wider context clear.

Apparently I Was a Deep Thinker

My arms were not the only part of me producing peculiar sensations.

On another occasion, somebody commented that I appeared to be deep in thought.

I wasn’t.

I was being bothered by a numb face.

I had developed a habit of putting my chin in my hand and rubbing it, hoping that somehow I could encourage the normal feeling to return. To an observer, I presumably looked contemplative.

Inside my head, the thought process was rather less profound:

Why is my face numb?

Symptoms Without an Obvious Connection

That episode illustrates something important about my experience before my MS diagnosis. I wasn’t assembling these events into a pattern.

Why would I?

A disastrous swimming race, itchy forearms and a numb face did not appear to belong to the same story. They occurred at different times and affected different parts of my body.

Even today, knowing that numbness and altered sensations can occur in MS doesn’t allow me to prove what caused an individual episode decades ago.

The same caution applies to symptoms I experience now. My jangly legs and involuntary leg movements, for example, are part of my lived experience, but having MS doesn’t automatically make MS the explanation for every bodily oddity.

Back then, however, I wasn’t even asking that question.

I still regarded myself as perfectly healthy.

The Day My Legs Collapsed

Eventually, something happened that was much harder to explain away.

I was working from our office at Howemoss Industrial Estate in Dyce, just north of Aberdeen.

At lunchtime, I became peckish and decided to drive into Dyce to buy a sandwich. I parked across the road from the shop, got out of the car and started walking across.

Halfway across the road, my legs suddenly turned to jelly.

I collapsed in a heap.

I wasn’t injured, but I was thoroughly embarrassed. I picked myself up, dusted myself off and continued towards the shop.

That probably says something about how I thought at the time. I didn’t know why I had fallen, but once I was upright again, the immediate problem appeared to have gone away.

So I carried on.

I Still Didn’t Think I Was Ill

I hadn’t felt dizzy. I hadn’t tripped over anything. As far as I could tell, there was no obvious explanation for what had just happened.

Yet I still didn’t think of myself as unwell.

Perhaps that is one of the strangest aspects of unexplained symptoms. When something happens once and then disappears, it is remarkably easy to file it under that was odd and get on with your day.

My day, however, wasn’t finished with me.

Later, I would become much more conscious of how variable my energy and physical abilities could be. It is part of why I now think carefully about imited energy and the idea behind being a spoonie and why my morning routine starts at a rather more considered pace.

On that day in Dyce, I hadn’t learned any of those lessons yet.

The Briefcase That Changed Everything

At the end of the working day, I prepared to leave the office.

I reached down for my briefcase and tried to pick it up.

My hand opened.

The briefcase stayed exactly where it was.

I tried again. I could grasp the handle, but as I attempted to lift it, my grip failed.

That was different.

Falling over once could be dismissed as an unexplained stumble. Suddenly being unable to maintain my grip on an ordinary briefcase was much harder for me to rationalise.

Eventually, I used my left hand, picked up the case and headed home.

But this time I didn’t simply forget about what had happened.

Finally Seeking Medical Advice

My GP was back in Fife while I was working in Aberdeen, so I telephoned a local doctor and explained the situation. Fortunately, the practice agreed to see me.

I described what had been happening.

The doctor sent me straight to Aberdeen Royal Infirmary for investigation.

That was the point at which my collection of disconnected oddities began to become something more serious.

I underwent an MRI scan and a lumbar puncture. I was told that the findings were suggestive of MS, but the consultant did not at that stage give me a definitive diagnosis of multiple sclerosis.

That distinction puzzled me initially.

I had undergone tests. Something had clearly been found. Yet I still didn’t have the simple yes-or-no answer I expected.

From Suspected MS to a Diagnosis

I later came to understand my first neurological episode in terms of what is called clinically isolated syndrome, or CIS.

CIS describes a first episode of neurological symptoms of the kind seen in MS. Diagnostic practice has changed considerably since my experience. Today, MRI findings, spinal-fluid evidence and the McDonald diagnostic criteria can sometimes allow MS to be diagnosed after a single clinical attack. In other circumstances, a person may still receive a diagnosis of CIS rather than MS.

My own experience happened under the diagnostic approach of the time.

For me, the waiting continued.

Five Years Until the Next Episode

Nearly five years passed before another significant episode appeared.

This time, I consulted a neurologist privately. With my history, previous investigations and the new episode to consider, he confirmed that I had multiple sclerosis.

That finally gave a name to something that had been hovering in the background for years.

In one sense, the journey from symptoms to an MS diagnosis had ended.

In another, an entirely different journey had begun.

Receiving the diagnosis did not suddenly explain every strange thing that had ever happened to me. What it did provide was context. Experiences that had once seemed completely unrelated could now at least be considered as pieces of a much larger picture.

The brain can be difficult enough without MS joining the conversation. Over the years I’ve had to find my own ways of dealing with problems such as brain fog and cognitive difficulties as well as the more physical symptoms.

Looking Back Before My MS Diagnosis

Hindsight is a wonderful thing, but it can also be deceptive.

I can look back now and recognise that several experiences from my past resemble symptoms known to occur in MS: unusual fatigue, numbness, altered sensations, weakness and loss of control.

But resemble is the important word.

I cannot travel back in time and establish that every strange sensation was caused by MS. Nor would I suggest that another person experiencing numbness, exhaustion or weakness should assume that they have it. Many symptoms associated with MS can occur for other reasons, and diagnosis belongs with medical professionals.

What I can describe is what happened to me.

Early Symptoms That Made Sense After Diagnosis

For years, the incidents existed as separate memories.

There was the swimming race where my energy vanished.

There were the cold, numb and maddeningly itchy forearms.

There was the apparently thoughtful man who was actually rubbing his numb chin.

There was the embarrassing collapse in the middle of a road in Dyce.

And finally there was the briefcase I simply couldn’t hold.

These became early symptoms that made sense after diagnosis, not because I can prove what caused each one, but because the eventual diagnosis gave me a new framework through which to understand my past.

That is perhaps the biggest difference between experiencing symptoms and understanding them.

Beforehand, I had incidents.

Afterwards, I had context.

My Life Before and After the Diagnosis

More than thirty years later, I can see why that distinction matters.

An MS diagnosis did not turn me into a different person. Nor did it provide a neat explanation for every ache, itch, stumble or forgotten word that followed.

It gave me information.

Over time, I learned more about the enormous range of multiple sclerosis symptoms and, more importantly, learned that no two people necessarily experience them in quite the same way.

That is why I tell this story as my story rather than a checklist for recognising MS.

Before my MS diagnosis, I was not ignoring an obvious trail of textbook symptoms. I was living my life while a collection of strange and apparently unrelated things happened along the way.

Only afterwards did some of them begin to form a recognisable pattern.

They were the opening chapters of what eventually became my journey of living with MS.

The rest, as they say, is history.

I do not treat multiple sclerosis as a joke but. I do have a sense of humour.

There is no single experience of MS. MyMSisMe describes one experience while using reliable evidence to explain the wider picture.