Monday 15 April 2013

so many shades of grey!

As owners of an unknown thing I believe we'd do well to view our condition with an open mind. Neurologists would appear to have been barking up only one tree in their search for the shape, colour and texture of this condition.
Arguments rage in MS forums the world over as to whether MS is an auto-immune disorder ie the patient's own myelin is mistakenly eaten up by their own immune system (like their very own very hungry caterpillar or our very own Fidos please see earlier post) or whether MS has vascular aspects to it - disordered cerebral bloodflow creating oxbow lake type damage from whorls and eddies in veins. Flood damage, if you will is caused when blood is held up leaving the head perhaps also being implicated in slowed perfusion to the brain. Our blood  dithers and loiters rather then leaving the head in a timely manner and ends up dawdling back to the heart. 
Ok, not very scientific descriptions. 
But the main arguments appear to have become quite binary - either you believe the immune system is confused or you believe the  vascular system requires its own NRA (National Rivers Authority rather than National Rifle Association) although the strength of feeling amongst patients and their professional care givers can run quite high so perhaps both NRAs are needed?).
I believe a little of both theories could be going on in my own body.
2 of my NHS neurologists have been chief advisers to the UK MS Society. The first one looked after my gran as she died (thankfully relatively quickly of motor neurone disease in her late 80s. She thought he was great - he apparently had a fantastic bedside manner. All i knew, 2 years before my MS diagnosis and before the internet had really taken off amongst all but the earlieset adopters was the need to find some sort of drinking beaker for my nan's failing hands. http://www.tommeetippee.co.uk/product/easy-drink-beaker/
the neurologist who gave me my diagnosis died and, 10 years later i was appointed the man who looked after my gran it was only then that i realised his bedside manner worked best on frightened patients who didn't ask questions of their experts (from what I've been led to believe the man in 50 shades also wants a subservient, pliable female). A few years on and our relationship didn't blossom into the classic doctor,patient/master/slave one so i asked to move to the care of a younger neurologist for whom i'd taken part in a study and had regular MRIs for 6 months. Once he'd taken on the role of my caregiver I saw that he too needed to feel in the position of 'expert'. 
Thing is 'expert' is a relative term especially in the field of MS.


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