‘Mystery illness poleaxed me and perplexed my doctors’

June 30, 2010

From the Daily Telegraph, 30 June 2010 (story by Richard Preston)

One moment Richard Preston was a healthy, active 44-year-old man, the next he could barely lift a carrier bag. Worse, nobody could work out what was wrong with him.

It was on the opening day of the Beijing Olympics in August 200 that I started to feel really ill. I had had a dull headache and an upset stomach for a couple of days before, with an odd metallic taste in my mouth, but by that morning the symptoms had developed to the point where I needed paracetamol and an Imodium to get out of the house.

That was my first mistake. I would have been better off in bed, but as an assistant editor I was on a rota to edit this newspaper on what looked likely to be one of the more exciting days of the year, with the opening ceremony of the Olympics to watch and Russia clashing with Georgia over South Ossetia. And it was a Friday, so I thought I would have the weekend to recover.

Next morning, I woke with a raging thirst, intense pressure in the back of my head and a very strange sensation in my feet – a spongy feeling that was to be with me for the best part of the next year.

When I walked more than a few yards, the pressure in my head increased, my mouth went dry and my feet felt as though I had just walked through a deep puddle with shoes and socks on: soggy, disconnected, something like the sensation I remember having with concussion.

I wasn’t likely to collapse but behaved, after a very short walk, like a car running out of petrol: I would slow to a shuffle and then simply have to stop. I seemed to have no adrenaline to get me moving again.

My reaction to this was, at first, intense annoyance – I was fit, 44 years old and used to running around; I had played cricket earlier that week and was looking forward to playing again.

Assuming that I had been hit by some sort of virus, I guessed that I had overdone it on the day I carried on working and was now paying the price. I had only ever been really ill once before, a few years ago, when vicious sinusitis knocked me over and left me with a similar sort of weakness.

So I told myself that I must have some sort of post-viral fatigue. I didn’t go to the doctor because I had a fortnight’s holiday coming up and assumed that a decent rest and some sunshine would sort me out.

A week later my family and I flew off to Greece for what turned out to be one of the more catastrophic holidays we have taken. I could barely lift a carrier bag, much less a suitcase, and wanted most of all to lie in a dark room on my own, rather than help keep charge of our five-year-old daughter and noisy, dangerously mobile 15-month-old son.

As well as constant thirst, I felt the need for big and frequent meals; if I delayed lunch by even half an hour I felt weak, dizzy, a little panicked, and I seemed to need sugar, usually in the form of a Coke, to get me through even the shortest walk.

Perhaps I was wrong, but I couldn’t see the point of visiting a doctor on a small Greek island with a set of symptoms that I was having difficulty describing, and for which I didn’t think there would be an instant remedy.

By the time I saw a GP at home I had been ill for three weeks. The basic check-up – blood pressure, eyes and ears, prodding of glands – showed nothing, so I was sent off for a blood test to check for hepatitis, the Epstein-Barr virus (which causes glandular fever) and a few other suspects. The results – negative – took a week to come back. I spent another week lying at home before going back to the GP, who sent me for another round of blood tests, principally for viral ‘titres’, markers for various viral infections. All negative, again.

It was probably at about this point that I could be said officially to have entered mystery illness territory. My GP had, I think, satisfied himself that I was not suffering anything likely to kill me.

There was nothing visible to work with and my blood tests all looked normal. ‘Post-viral fatigue’ seemed to cover it, for which rest was the only prescription. But that’s no kind of diagnosis if you are off work, and feeling increasingly anxious and guilty about your absence.

All I could do was tell myself, and colleagues, that another week should sort me out, but that was simply based on hope and the sense that if being off sick for two or three weeks was awful, then the prospect of that becoming a month or two months was unimaginable. It took many weeks to accept that this was going to be a long haul, and to lose the habit of thinking ‘another week will do it’.

Having tried acupuncture a couple of times before, I took myself off to a Chinese medical centre in the hope that needles might at least ease the pressure in my head. I emerged £75 lighter, carrying several bags of dried herbs to boil up at home, and not feeling noticeably better – but I went back for more because this was treatment of a sort, which was more than my GP had to offer.

That’s the trouble with a mystery illness. You’re very open to everyone else’s theories about what might be wrong with you and are eager – desperate even – to try any remedy. Inevitably, friends and colleagues wondered if I might have ME. Some judicious Googling eliminated that quite quickly. I say judicious because while it’s true that you can find a website to confirm your worst suspicions about any medical condition, it doesn’t take long to find the calm and sensible voices.

What appeared to be the most thorough and exact description of the symptoms of ME or chronic fatigue syndrome suggested that sweating, muscular pain and intense sleepiness were usually noticed, and I didn’t have any of them. Other friends suggested a thyroid problem or diabetes but blood tests didn’t point to either, and while I was thirsty I seemed to be craving sugar rather than trying to expel it, as a diabetic would.

By now it was late September and I had been ill for nearly two months. I gave osteopathy a try because I’ve found it useful before for back and shoulder pain. Anything that relieved the pressure in the back of my head was a help and so, on the osteopath’s advice, I spent long periods lying on the floor at home, my head supported by two tennis balls knotted inside a sock. That felt OK, but it wasn’t making me better.

At this point, I made a leap that is not open to everyone and which I should have made weeks before: I went private, using the company’s insurance scheme. In retrospect, I can’t see what held me back, except that making any decision at all when you need to lie down after climbing a few stairs is hard; and trying to explain yourself to a stranger on the telephone is doubly difficult when you’ve no idea what sort of specialist you need to see.

I sent myself to an ear, nose and throat consultant who had operated on my nose after I had sinusitis. It seemed the right place to start, since my headaches felt at least a little like those that sinusitis had given me. He sent me for an MRI scan of the head, and for a long list of blood tests, on a scale that I doubt any cost-conscious NHS GP would countenance, none of which showed a thing.

So he referred me to a neurologist, on the reasonable assumption that if someone is complaining of tingling feet and pressure in the head, neurology will supply the answer. The neurologist sent me for his own set of blood tests and nerve conduction studies, which show whether nerves supplying muscles are working properly – it was the connection between my head and my feet that interested him, he said, not my headache per se.

Several sets of tests led nowhere. He even tested me for Lyme disease, the tick-borne infection, after a friend mentioned someone he knew who had had it and felt as I did. Negative again. The neurologist said that he saw people every week with symptoms something like mine and in many cases there was no diagnosis possible. ‘I’m afraid we can’t explain everything,’ he said.

Strangely, I found this reassuring. It was a reminder that those are words you are unlikely to hear from alternative practitioners, whose pitch is based on being able to explain everything, in particular those conditions that mainstream medicine can’t. Real diagnosis, meanwhile, is about the patient elimination of possible causes, one by one. And a long list of potentially threatening conditions had been eliminated from my notes.

There was one thing that people in my situation sometimes found helpful, the neurologist said: a very small dose of a tricyclic anti-depressant – amitriptyline was the one he had in mind; no one knew how it worked, but it seemed to have beneficial effects on the brain and nervous system.

I pointed out that I wasn’t depressed; he said he was thinking of a dose so small that it wouldn’t be effective for depression anyway. I have since discovered people who have had it prescribed for a variety of conditions, including backache and migraine.

So I started with one tiny tablet, which didn’t seem to do anything and worked up to three, which began to ease the constant pressure in the back of my head. But I still had the other symptoms, and any sort of exercise brought the headache back; I was waking regularly throughout the night, too, and would lie listening to my heart thumping much too fast.

All of this was difficult for my family to live with. Someone my wife knew, a young father, died from a mystery virus that autumn. I never imagined that I wouldn’t get better, but who could say how long I would be shuffling around the house, desperate for her to take the children out, even in pouring rain, so that I could have a couple of hours’ peace on the sofa?

Late in October my wife and some friends suggested I go away somewhere to recup­erate. I sensed that I needed more than a rest, but removing myself from the house seemed like a good idea for everyone, so I spent a week in an almost empty seaside hotel near Margate, eating large meals, sleeping in the afternoons and taking feebly short walks along the promenade. Looking out to sea was a tonic after sitting at home for three months, and the wind and spray were, like Skegness in the posters, bracing, but I didn’t feel very different at the end of my stay.

It must have been after about six weeks in his care that I found myself telling the neurologist that I felt sure I was not suffering the after-effects of anything: that whatever was wrong with me, I was still right in the middle of it. I told him that as well as everything else I had an intense aversion to alcohol and that some foods went right through me, as granny used to say.

Mm, he said, perhaps there’s someone else you ought to see, a physician with a particular interest in fatigue-related disorders. So off I went for another round of blood tests and interrogation. Had I had a glucose test, my new doctor asked. He seemed a little surprised that I hadn’t.

The oral glucose tolerance test (OGTT), with which diabetics are familiar, couldn’t be simpler. You turn up first thing in the morning and drink two cups of Lucozade on an empty stomach; blood is taken regularly for the next three hours and the glucose level measured. About an hour into the test I had to lie down, feeling not only weak but full of morbid thoughts. Shortly afterwards, the nurse showed me a graph tracking my blood sugar level. What’s supposed to happen is that the line rises, briskly but steadily, as the Lucozade is absorbed, before briefly flattening at the peak and descending as steadily as it rose. Instead, my blood sugar shot up instantaneously, before plummeting just as quickly to what the nurse described as ‘barely above seizure levels’.

The diagnosis was ‘reactive hypoglycaemia’ – the body reacting to a sudden introduction of carbohydrate or glucose by dumping it far too quickly; it’s roughly the opposite of diabetes, where the glucose level remains too high. There’s lots to learn on these medical journeys and what I learnt that day was that the brain must have glucose to function. So when it doesn’t have glucose, it thinks it’s dying. Hence my morbid thoughts. ‘We sometimes describe it as a sense of impending doom,’ my physician said. ‘One of the most unpleasant feelings there is.’

At last there was something to tell people – not an -ism or a disease but a condition that when translated began to explain why I had been feeling so wretched. I would need to snack regularly and keep an eye on the glycaemic index (GI) of foods, the nurse said, choosing the slow-burn sort rather than pasta, potatoes and sugar-heavy puddings.

Was that it then? Hardly. It was around Christmas, four months into the episode, when the physician said, ‘I think we should look at your chest.’ So off I went for an X-ray, then a CT scan. What came back were pictures I imagine a first-year medical student could have decoded – great shaded areas on each side of my chest. There was nothing wrong with my lungs, so what we were looking at was probably inflammation of the lymph nodes.

‘It’s possible you have a disease called sarcoidosis,’ the physician told me. I think he was enjoying the detective work, and I felt the same. Sarcoid (doctors use the short name), which sounds like something you might catch from the French president, is an inflammatory disease in which granulomas (clusters of immune cells) appear, most often in the lungs or the lymph nodes, though they can be found in almost any organ. In some cases there are no symptoms at all; in others, all sorts of debilitating disruption is caused.

It’s difficult to diagnose and much of the work seems to involve eliminating other suspects. An abnormal level of something called angiotensin-converting enzyme (ACE) in the blood is one marker for sarcoid and several blood tests showed I had it (I’ve made several attempts to understand what ACE is and does, but am still baffled). Calcium levels in the urine are also significant. Measuring that means collecting 24 hours’ worth of pee in a plastic jerry can – simple enough, though I struggled to carry it to the lab. That, too, pointed to sarcoid, though my combination of symptoms seemed unusual.

I had a further scan – a PET scan, where a radio­active tracer is injected – to get a sharper picture of my chest. The tracer shows areas of the body where glucose is used; a PET scan is most often deployed to find cancer tumours because, in the process of growing, they use more glucose than healthy tissue does. These pictures showed my lymph nodes flaming with activity.

Clutching a CD-rom that contained my scans, I was sent to a chest expert at another London hospital for a second opinion. He peered at the images on his screen for no more than 30 seconds before giving a reassuringly decisive verdict. ‘You’ve got one of three things – lymphoma [cancer], tuberculosis or sarcoid.’

The way to get a definitive diagnosis would be to cut out some tissue from the chest for a biopsy, but he warned that it would be pretty unpleasant and was probably unnecessary. I had none of the symptoms of tuberculosis and as for cancer, I was feeling slightly better than I had been six months earlier – one useful marker was that I could lift and carry for a short distance our by now 21-month-old son, who, obviously, was getting heavier by the month. If I had had untreated cancer for six months, I would more likely be dying.

Nevertheless, there was an anxious week’s wait until the chest man reported the results of a case conference, where it was agreed, on the basis of all the available evidence, that the likeliest cause of my symptoms was sarcoidosis.

So there, six months on, was a diagnosis. But even then, it came with caveats. We had to assume, my physician said, that sarcoid was to blame and that the unusual combination of feelings in my head and feet meant that it had got into my nervous system, but we couldn’t be sure. The reactive hypoglycaemia appeared to be only one of a bundle of unpleasant side effects that accompanied the illness.

By and large, sarcoid seems to go away of its own accord – another doctor told me that typically it took between nine and 18 months. I was still taking amitryptiline, six times the original tiny dose the neurologist had given me, in fact – enough, I was told, to have knocked a healthy person into a deep sleep, but for some unfathomable neurochemical reason, it did me good. The physician reiterated what the neurologist had said: no one knew how it worked, but it was best thought of as a sort of ‘acupuncture for the brain’.

A couple more weeks passed before he said he was tempted to try steroids. They wouldn’t be a cure but they might help alleviate my symptoms and get me back to work. While I was not bed-ridden, I was almost house-bound. I could manage a 400- or 500-yard walk to buy a morning paper but I needed to sit down and have a cup of coffee before attempting the walk back home, and even then my pace was no more than a steady shuffle.

Knowing that reactive hypoglycaemia was part of my problem, I was eating meat and green vegetables, rather than pasta or potatoes, and was avoiding anything too sweet. I had mental energy – a decent night’s sleep would see me through the day – but none of the physical reserves to deal with a busy street or a crowded room. I could carry my small son a short distance but I couldn’t have carried a bag of shopping the length of the street. The moment I over-exerted myself, the symptoms kicked in – pressure in the head, wobbly feet and a dry mouth.

I started on a small dose of a steroid, prednisolone, in March last year. It did what steroids are known to do – puffed up my face and my stomach – but it also seemed to lift the peculiar sensation from my feet, at least enough to allow me to walk further than I had in eight months. By late April I was ready to make a tentative return to work; three days for the first few weeks, then four, before returning to five full days last September.

There have been little landmarks along the way, unnoticeable to anyone else, but small victories to me. Carrying my son up the stairs without feeling poleaxed (November); walking at the same speed as everyone else on a London pavement (January); stopping the drugs (April). My next little goals are to lift up my daughter, now seven, and to run up the stairs; even now, nearly two years after falling ill, I know I couldn’t do either without reeling.

It has all been very strange, but it hasn’t been life-threatening and I will, I hope, feel fully fit again later this summer. Sarcoid can return – the chest man says the longest gap he has seen between a disappearance and a recurrence is 12 years – but since no one knows why it comes, there isn’t much point my worrying about it reappearing. The hypoglycaemia just seemed to fade away – simply another element in the mystery of how the body regulates itself in times of trouble, I suppose.

There’s no reason why having a disease should teach you anything, other than that feeling well is something to be treasured, but if nothing else in the past two years, I have come to see that it’s fine to walk slowly, that calm and patience are almost always more useful to the spirit than adrenaline and panic, that the support of family, friends and colleagues is beyond price. Above all I have learnt that diagnosis remains an extraordinary art, however much we think we know who we are and what we are made of.


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