Wednesday, 28 October 2009

What happens to neurology patients with symptoms "unexplained"?

To be told that your symptoms have no identifiable physical cause can be at once both a relief and a curse. In one sense the doctor is giving you a clean bill of health. But there's the chance they have made a mistake. What's more, if the symptoms persist without explanation, you face the stigma and frustration of people suspecting your problems are "merely" psychological or, worse still, made up. A new study has investigated neurology patients who were told that their symptoms had no identifiable physical cause, following them for a year and a half to see if and how their diagnoses changed.

Jon Stone and his colleagues recruited the help of 36 consultant neurologists working in Scotland's main neurology clinics. Besides a minority of patients who were excluded for being too young or ill, records were kept from nearly all new neurology cases in Scotland between December 2002 and February 2004.

Of the 3781 available patients, around a third were diagnosed as having symptoms that were either "somewhat" or "not at all" explained by physical disease, as opposed to being "largely" or "completely" explained. Of these unexplained cases, the majority were told by their neurologists either simply that their symptoms were unexplained or that they had a headache or that they had conversion symptoms (the physical manifestation of an emotional problem). In a minority of cases, patients were given vague diagnoses such as "pain symptoms" or "fatigue".

Had the story changed much 19 months later? Through contact with the patients' GPs (their primary physicians), Stone's team found just four cases where the neurologist had confidently declared the patient's symptoms as unexplainable, but where an organic illness had subsequently been diagnosed - these were multiple sclerosis, Alzheimer's Disease and two forms of brain lesion.

About 100 other patients had also subsequently received a change of diagnosis, but in most of these cases it was simply that an organic cause that had previously been identified as "somewhat explaining" the symptoms was now seen as the sole cause. In other cases, the initial neurological diagnosis had allowed for the possibility that a physical diagnosis might later be found; a genuinely new condition had emerged; or in some cases, the first neurologist still disputed the subsequent organic diagnosis made by another doctor. There were also five deaths, although these were apparently unrelated to the patients' earlier symptoms.

"New diagnoses that explained the original symptoms rarely emerged over the following 18 months in this study," the researchers said. "Whilst the diagnoses of 'symptoms unexplained by organic disease' must continue to be made with care, the data presented here suggest that serious diagnostic change after an initial clinical assessment by a consultant neurologist is unusual."

ResearchBlogging.orgStone J, Carson A, Duncan R, Coleman R, Roberts R, Warlow C, Hibberd C, Murray G, Cull R, Pelosi A, Cavanagh J, Matthews K, Goldbeck R, Smyth R, Walker J, Macmahon AD, & Sharpe M (2009). Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up? Brain : a journal of neurology, 132 (Pt 10), 2878-88 PMID: 19737842

Post written by Christian Jarrett (@psych_writer) for the BPS Research Digest.

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EMG said...

This is another wonderful example of Cartesian dualism where you depend on symptoms and lab tests. None of the authors have appeared to consider the influence of the chemicals added to carpets, washing powder (formaldehyde) etc. These can cause headaches, dizziness and a myriad of other 'medically unexplained' complaints. A poor psychologist accepts the above findings, but if you read your journals, includign the Lancet, you should know that you need to cosnider the possibility of 'sick building syndrome' and the various toxins in cleaning fluids etc. Their effects have been documented for long enough. C'mon guys. Stop being so uncritical and do not reinforce flawed research.

Mentor Paul said...

The real problem is once a neurologist says a patient's symptoms are unexplained, they no longer bother to properly examine them even when new symptoms occur. The patient is then dumped by the medical profession to deal with things on their own. Just because neurologists do not change their diagnosis does not mean they have not missed something, often they are just too lazy to re-examine. Some are also more concerned with cost than they are with making sure patients are properly investigated. Unfortunately some pychiatrist and neurologists, including Dr Stone, recommend that patients where pathology isn't easily identified, are not over investigated in case their abherant illness beliefs are reinforced.

Every other encounter with the medical profession is infulenced by the patiemts diagnosis of psychogenic illness. Patients are then treated as time wasters and neurotic even when they have no evidence of psychiatric illness.

Doctors should remember from past mistakes when now recognised neurlogical conditions such as dystonia, MS, Parkinson's Disease and numerous others were considered 'psychogenic'.

I would suggest Dr Stone visited some of the patient forums. He will find many people on them who were at first told their symptoms were unexplained and later when they have found a caring neurologist who actually listened to them and thoroughly investigate them, are then diagnosed with a recognised condition.

Neurologists need to have a bit of humility.

Anonymous said...

I have today been told that I have an 'unexplained nuerological condition', even though all my symptoms point to MS.

Feel so let down by the neurologist. Sent back to my GP, symptoms worse than ever.

Anonymous said...

I couldn't agree more.. Also the changing of the goalposts is another area they need to consider.Maybe a tighter more clearly defined criteria for diagnosing psychogenic or functional illness should be in place. All of the symptoms listed on Mr Stones website could be anything of any disease there are so many, most probably every patient has at one time had a few of them and not because of a functional diagnosis, but because they might have had something as simple a cold... I predict a huge stink in the future for the people peddling this kind of unhelpful Wishy Washy kind of research .What they are saying is that a person with depression or mild mental health,can't possibly have any kind of real illness and therefore overlooked and not even given the correct tests they should automatically be entitled too.Beware if you have ever had any kind of stress noted in your health records, because you will be dismissed after very cursory examinations and very limited tests.. Have been labelled as functional myself, even with clonus and increased tone which according to should never be a symptom of functional diagnosis.. Unfortunately I was given no follow up care and have visions of growing old with this illness and having no help whatsoever. Seems a huge step back in time to me, to label patients as liars and hysterical..All patients are paying the price for this and sadly it will be too late for many who are cast aside by lazy or arrogant neurologists who are all to ready to give a functional diagnosis.I also suggest that as well as Mr Stone looking at patient forums, he talk to the lowly Gp about the huge increase in functional diagnosis within the last few years and the problems it has caused for them. It is all very well to popularise the functional theory, but the outcome is quite a different story for those who are cast of and left with symptoms and signs unexplained because as fair a person as Mr Stone seems to be, he cant monitor or police neurologist who just don't care.

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