Jonathan >

We live in age and a culture that isn’t content any more with the answer ‘That’s just the way things are’.

The search for understanding is as old as homo sapiens, and has enlightened and empowered us all in some degree ; but are we too ready to accept as answers that which is merely conjectural?

The freedom and willingness to challenge the status quo, more recent in its origins, has addressed injustice and promoted fairness, but is it increasingly used as a weapon to extort advantage?

And when scientists talk with apparent certainty – and confidently deploy the marvels of medical science and technology, editing genes (the awareness of which is barely older than I am) so as to banish some rare and serious congenital condition, are they – are we – too ready to believe that more commonplace medical conditions have all been reduced to a simple process of testing, diagnosis and treatment?

In short, has our quest for improvement in the human condition resulted in unrealistic expectations, a false sense of entitlement?

Around this time last year I was away from home for a couple of days, in Glasgow for an appointment at Queen Elizabeth University Hospital with the Neurology consultant. I posted about that at the time, but omitted to report the consultant’s conclusion, which was that the pain in my head was most likely caused by the codeine in co-codomol tablets prescribed by my doctor for pain mostly in my bac. On my return to Uist, a different regime of medicines was prescribed, and the head-pains eased a lot. This, however, did nothing to explain the cause of tge back pain – or the various other symptoms.

Over the following months, further appointments followed : at the Western Isles Hospital (Ospadal nan Eiean) in Stornoway, Isle of Lewis (Rheumatology consultant) ; and the Golden Jubilee National Hospital, on the banks of the Clyde, downstream from Glasgow (for a CT-scan that lasted almost an hour, and left me seized up and unable to move or even speak!). Each trip required two days away from home.

Ospadal nan Eilean – Western Isles Hospital

Jonathan at Golden Jubilee National Hospital

Returning to Benbecula airport

Ospadal nan Eilean, Stornoway

Jonathan, Queen Elizabeth University Hospital, Glasgow

The CT-scan was to look for indications of Ankylosing Spondilytis, but after a two-week wait for the radiologist to report back to the consultant, and the consultant to report to my doctor, that was ruled out. Indeed the consultant pretty much ruled out anything rheumatological – just as the neurologist had pretty much ruled out any underlying neurological cause.

So, to summarise, I have a number of chronic symptoms, including some normally associated with neurological problems, and others associated with rheumatological problems ; and yet I have no diagnosis of either of these – or anything else, for that matter. Lyme Disease was finally ruled out once and for all, and ME too. In fact I have no diagnosis at all.

For nine months now I’ve had a settled regime of various medicines to take, and they seem to do what’s required with no apparent side-effects – other than being a zombie in the mornings. Occasionally I stop taking some of them, just to find out whether I still need them : within six hours (less if I’ve been doing fairly physical work), I am beginning to feel uncomfortable, and within 12 hours I’m suffering considerable discomfort, and after 24hrs it’s pretty much unbearable : I can’t sit, can’t stand still, can’t lie down and I certainly can’t sleep.

My case is quite complex, chronic and without treatment would be debilitating ; but it is not life-threatening. Getting a meaningful diagnosis could cost a great deal of NHS money ; and yet such a diagnosis would probably not make any significant difference to the treatment – or prognosis. The NHS has got more effective ways of spending its money, and on more needful cases. I accept that. I have managed to shake off the expectation that a diagnosis should be forthcoming, the sense of entitlement to a cure. I don’t feel the need to demand anytuing more – and certainly not to hold anyone to account. I don’t need closure. I’m content with where I am. I am content that this is just the way it is.

I am grateful that in Scotland we don’t pay anything for our medical needs – not consultations, not medicines, and (for those living on islands or very remote areas of the Highlands) we don’t pay for travel and accommodation on trips to hospital or specialist clinics.

The doctor says (or would say, if pressed), all you need to know is that the tablets work, so just keep taking the tablets!