Dear all,

Not sure where to begin, as I have only just found out that my mother has WG. My mum is 48 years old, white woman, from what I've been reading she seems to be typical for WG. For the last 2 weeks, my mum has had a really awful cough, fever,fatigue, joint pain, urine change, lost of voice, conjuctivitus, tongue ulsers and a bad ear infection. She saw her GP and he gave her antibiotics, but instead of getting better, she just got worse. She also for the last 6 months had terrible sinus problems, she said that she had to wait until after her shower before she could blow her nose. She was blowing out terrible bloody clots. She also has has this cough for about 3 years that would never go away, no matter what she took for it. Her feet were also swollen. Her GP thought that she was having gout in her joints. Now I believe that it was the WG.

My mum's partner forced her to go back to the GP after 2 weeks of being breathless and coughing. My mum never takes time off work, and fer her to have 2 weeks off was unheard of. The GP was utterly useless. He just wanted to give her more antibiotics. Luckily, my mum has private health insurance and they got the GP to write a referral letter to the private hospital. She saw a specialist that same day. At first, she said that he didn't take her that seriously, as her voice didn't seem horse enough. He put a camera up her nostral and explained that she had saddle nose and that she needed to go to the emergency ward with a letter from him.

When they went to emergency, she was admitted in straightaway. Doctors were asking questions on whether my mum's nose had changed shape etc. However, her physicial appearance of her nose was normal. At this stage, the specialist said that he suspected a serious condition, but would not specify until the tests were done. She has chest xrays, MRI, blood, urine, CAT scans and many more tests. She was put on to oxygen permenantly and IV. They were only keeping her stable for a few days until they could reach a diagnosis.

2 days ago, the diagnosis of WG was given and they started her on steroids. On Friday, she will be starting chemotherapy, they said for 3 months daily. They are also looking at the kidneys, to see how damaged they are. Yesterday was her first day on steriods and she seems a bit perkier. I just know that the chemo will probably bring her back down again.

I would be interested to hear if anyone has had chemo when they have WG and how it was for you or your loved one? Do you stay in hospital for the duration or do you get to go home and continue treatment?

I'm trying to remain positive for my mum and keep calm. I keeping my practical head on and making sure she has everything she needs for her stay. At home, away from everyone, I have secretly wept from fear of losing her and not knowing what to do with myself. I will update this as her treatment continues. Sorry if this seems jumbled, my mind is all over the place at the moment. I think you can read too much on the internet and scare yourself. The internet is a wonderful source of information, however, it can also give you too much info or misleading information.