Reply To: GBS/CIDP Survey

April 5, 2012 at 5:44 pm

As I have created my own survey (and in 3 weeks over 200 people have completed it – Thanks to them). I too have been told that it is un-validated, subjective and a waste of time! However I seriously beg to differ, for a couple of reasons:

1) All evidence is subjective – The tests being done on me to see whether I am improving involve my consultant apply force in the opposite direction to me (and with larger muscles). He then writes down hi feelings about my ability. If I don’t press back quickly enough he will write down the wrong figure. Also it depends on his judgement between one time and the next (which are weeks ago). Additionally if you ask 1o people how much a punch hurts they will all say different amounts (even if you tired to punch them all as hard as each other). So any medical person asking patients how much it hurts etc. is always subjective to the patient.

2) I am after getting more information out there so that people are diagnosed earlier or quicker so they do not go as far down as I did and can make more informed decisions. E.G. If I knew then what I know now I would not have elected to be treated by steroids, as I was given a straight 50/50 option (with no real mention to side-effects etc.) The real choice to me was, 7 more days in hospital, plus going every few weeks or go home and take pills – what would you choose if it is put like that? Now I know about the side effects (personally) and the 3 other pills I am on to counteract the steroids I would have chosen differently.

So I am doing this for other peoples benefit and am determined to “Publish and be dammed!” (Arther Wellesley) – no matter what “experts” say – especially as I now count myself as one by experience!