not sure if this has been mentioned before..... but if you're wanting to claim disability related benefits at some point in the future its a good idea to get a formal diagnosis- makes it so much easier if you have a piece of paper as proof that you can attach a copy of to your application form. makes the processing time considerably faster, and i found that in the medicals i didnt need to prove my symptoms were real when i could produce that piece of paper, they were taken as fact and so the medical was less stressful
and it also helps to have the diagnosis done and on your doctor's computer system- then if you need help in the future you can get referred to one of the hms/eds knowledgeable (in theory
) without needing to waste time getting your condition formally diagnosed. eg, before my diagnosis i used to go and see 'normal' gastroenterologists and they were completely unhelpful. they really could do nothing for me. but once i'd got my diagnosis i was able to go see prof Aziz and he was able to help loads and had knowledge of new types of treatment for intestinal infections etc (which my other gastro doc didnt believe even happened so knew nothing about treatments).