Hi, my name is Jo, please bear with me as I'm new to this and very tired as I've spent most of the day on public transport going to and from a hospital appointment. I attended an appointment in February at my local ENT department and was told by the consultant that I had Wegener's and that in the last 20 years he had only seen one person with this condition but strangely I was the third person that month who he'd diagnosed this year. I can't describe the relief after 8 years of hell to be told what was wrong with me. In 2009 I was diagnosed with M.E. but refused treatment at my local clinic as my GP flatly refused to recognize that I had the condition and no-one ever got around to explaining what was also causing my other non M.E. symptoms i.e. chronic ENT symptoms, irregular periods etc. I was told by another ENT consultant that atrophic rhinitis was causing my sinus woes and so that was that. To cut a long story short, my symptoms worsened and began to multiply and I was diagnosed with WG in February. Imagine my dismay when I rolled up to the Rheumatology department today after hours on a bus to be told that I now DON'T have Wegener's and that the ENT consultant should not have told me I had this condition as all tests that were done at Rheumatology and also a sinus biopsy were inconclusive. I had the biopsy in 2012, and other tests such as bloods, scans and x-rays were over a year ago and found no sign of WG. No further tests were carried out today. My main symptoms are chronic, bloody nasal crusting, a very large nasal perforation and a lot of destruction inside my nasal cavities, nose bleeds, voice changes, tickly dry cough, constant watering eyes which sting at times, blocked, painful, popping ears which have fluid behind the eardrum and one ear won't pop at times, tinnitus, some loss of hearing, difficulty swallowing, post nasal drip, headaches, joint aches and pains which are very debilitating, chronic fatigue and feeling very crap all of the time. Especially hard as I used to be very active with tons of energy. My Mum had Rheumatoid Arthritis and died of kidney failure in her fifties. Thyroid problems are rampant in my family - my thyroid is elevated but not enough to receive treatment. I am 46 by the way and previously to 2005 was in very good health. Please could anyone recommend the best ENT department in the UK which I can try to be referred to? I am DESPERATE! The North West area would be more convenient but I will travel if I have to! Thanks in advance for your help.