Hi, I haven't posted for a while but I'd really appreciate some advice if possible. I was diagnosed with long-standing Wegener's in Feb 2014 by ENT, and then informed in May 2014 by Rheumatology that after all the tests they'd run, Wegener's was not indicated. The last biopsy/bloods/scans/x-rays were done in 2012/2013 and I have had none since. I was absolutely devastated as my sinus symptoms had been on-going since 2005/6 and after surgery became much, much worse. I was also diagnosed with M.E. in 2009 which has nothing to do with the sinus problems, but makes me feel very unwell indeed. I now have a very large nasal perforation and destruction, copious bloody nasal crusting, a complete loss of smell and taste, constantly watering eyes, hearing loss and tinnitus in my left ear which is constantly blocked, and I now need a hearing aid. I'm 47, so not best pleased! I have trouble swallowing, tablets often get lodged and I feel like I have a permanent lump at the back of my throat. I have a recurring dry cough and often choke on saliva, food and drink and also the crusting which forms right at the back of my throat as well as permanent catarrh. My tongue is very 'dry' and uncomfortable and I sometimes get sore, red patches on my tongue and sore and swollen gums. I have a permanent 'bitter' taste or sensation in my mouth which never goes away, no matter how rigorous my dental hygiene routine, and despite drinking well over 2 litres of water per day. Rheumatoid/thyroid and autoimmune conditions run in my family too.

I asked for a second opinion to see an ENT consultant and have been given an appointment in Manchester UK with Rheumatology for reasons that have not been explained? If I don't have Wegener's I am at a loss as to why my wishes have been ignored and feel this will be a complete waste of my time yet again. I went back to the ENT department recently for a explanation from the consultant who 'misdiagnosed' me, but was seen by a completely new doctor who clearly hadn't got a clue about my case, who told me my hearing was worse, which I knew already and now I have to go for a scan. He prescribed a hearing aid and a nasal steroid spray which made my symptoms worse in the past and which has had exactly the same effect yet again, causing copious bleeding and my left ear to be blocked even more. I spoke to a lady from Patient Liaison who was very kind but I do not feel that I can ever trust this ENT or NHS Trust again and really would like to know my rights and if it is worth me going to the Manchester Rheumatology appointment? I am so low that I feel like ending it all as this has been going on for so long now that my quality of life if so bad now that I don't see much point in going on and dread any further appointments. Sorry to be so depressing but I really am at rock bottom.

Joanne