Hi has anyone with HNPP or CMT had one of these stupid medicals and managed to hold on to their benefits as a result of it? All I keep reading is the usual total negativity from sufferers as the examiners try to catch them out with silly questions!
I am beginning to get worried now as I have one on 11th Nov and I am so frightened of losing my benefit as it pays some of my bills, which eases my hubby's outgoings from his wages, as he is the breadwinner in the house, I honestly think we will struggle sooo much if I lost it, but I can't work coz of my disease and the numbness in my hands,feet and fingers,I have a dead floppy left leg and it constantly gives me pain even just walking a few steps. I have been diagnosed with HNPP since 1999 and only just been referred to a neurologist upon my insistence as I haven;'t seen one since being officially diagnosed, just palmed off with painkillers upon painkillers from my GP coz they just don't know enough about HNPP/CMT.
Can any fellow sufferers out there send me some good news, i can't even type properly as I cant feel my fingers hitting the keys so I have to keep correcting my new made up words. LOL! So any good news out there?