Originally Posted by
Joanne
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 2012 and was inconclusive, and bloods, x-rays and scans were all done well over 12 months ago, and I haven't had anymore since. I have applied for copies of all my medical notes etc as I don't have specific details about anca and such, and have asked for a second opinion. I am going to be very aggressive from now on as this has gone of far too long. With regards to saddle nose, my profile has definitely changed and is not straight anymore, and the front of my nose is now off-centre and bulbous, and not helped by rosacea either. I can't even go into my local supermarket anymore without someone making what they think is a 'witty' comment about how I look and my son has been very upset by the sniggering staff (I try to rise above it but one of these days!). I have compared past photos to how I look now, and boy, even I am shocked and pretty scared too if I'm honest, and my family have noticed the significant change. It's not 'my' nose anymore and the right side of my face doesn't look right either. My way of coping is to avoid looking in the mirror!!! Hopefully someone will be able to recommend a good ENT department in the UK and I can seek a second opinion. Thanks for your help.