I've yet to come across anyone in the DWP / jobcentre or even ATOS (Capita or whoever it is these days) who has even heard of my condition...QUOTE]
At the risk of preaching to the converted, teaching my granny to suck eggs etc.
The mistake many people make when completing the PIP/DLA/ESA form is to describe ailments and symptoms.
The forms are designed to (try to) assess how the ailment affects your daily life. Classic example asks, can you open a tin of sweetcorn and heat it up safely without assistance/supervision.
The forms are airly complicated and quite a few claimants get lost in the morass.
Best advice, if you are not sure, approach one of the voluntary organisations for assistance.