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Hi, Thanks to everyone who replied to my thread. Can't tell you how much I appreciate all the replies. I will definitely go to the Rheumatology appointment at Manchester. I have been told that...

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...

Hi Barry, thanks for your post. It's really heartening to hear that your wife has been doing well on the treatment. I have contacted John Mills at Vasculitis UK and I got an email back the same...

Hi keegan55, thanks for your post, so sorry to hear about your experience. I agree that WG is a pretty tricky condition to diagnose. I had a lung ct scan over 12 months ago after shadows showed up...

Hi Fran and Geoff, thanks for much for your invaluable info. Will let you know how I get on after I've done more research. Going to take my time and get it right this time!
Joanne

Hi Alysia, thanks for your message and the list of names. I've started a new thread as you suggested to try and find more info about a good ENT consultant/hospital. I found it really interesting...

Hi, my name is Joanne and I'm a new member from the UK. Please bare with me as concentration not always so good, and still finding my way around the forum as it were! I was diagnosed with WG in...

Hi Lily, I am a new member and I was really touched by your story, and particularly your gorgeous little dog Bo. You must miss him terribly. I don't live alone as I am fortunate to have a very...

Hi Titus 3:2, I do hope I can get my health problems under control too, and thanks for your post. You are certainly right about 'uncouth' people, no-one asks to be ill and it doesn't help having to...

Hi Fran, thanks for your really helpful post, I am going to check out the 'Vasculitis UK-Healthunlocked' and I can't agree more that this is a great forum, full of caring people like yourself who...

I will definitely demand better treatment and it's funny the point made about asking the doc what would they do if it was their child/sister/wife etc as that's exactly what I am going to do from now...

Hi Alysia and Titus 3:2,thanks for your replies. I was told by Rheumatology a couple of days ago that none of the tests they have done indicate WG and there is no inflammation. The biopsy was in...

Hi, I am a new member and wondered if anyone on the forum has experienced a complete loss of smell and an inability to taste any flavours like myself. I can differentiate between bitter, sweet,...

Thanks to the members who replied to my post, good to know there are caring, knowledgeable people out there who understand my situation. I also have insomnia so it's great to use a forum where...

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...