New from the UK

[misskay]

welcome aboard the WG rollercoaster Sam.... lots of good people here with lots of info.

[freakyschizogirl]

lol thanks

i honestly dont know how to feel at the mo...could burst into tears at any moment.

Suppose just have to wait til i see the specialist

[Jack]

Hi Sam.
I hope you are not going to have to wait too long. Wegener's has a habit of moving very quickly when you least expect it and you can't afford delays. What are your symptoms at the moment?

These are very early days for you so you can expect to go through the whole range of emotions. It takes a lot of coming to terms with, but knowledge of the disease helps a lot and this Forum is a good reliable source. In the meantime, if you want to rant or have a shoulder to cry on, just post and someone will come along to lend some support.

[freakyschizogirl]

Thanks Jack, feel like i need a hug!!

My symptoms are mainly saddle nose, hole in my septum, sneezing, crusting in my nose, nose bleeds that are heavy and long. And lately i've had what feels like phlegm on my chest that clears if i cough but i suppose it could be the WG?? Never really thought much of it.

It shouldnt be too much of a shock really. I have been told for years now it could be WG but no one really followed it up.
The ENT department in the Herts and Essex region are terrible. I dont think they ever cure anyone cos their waiting lists are getting longer and my appoiments always get cancelled.

[Sangye]

Hi Sam, welcome to the group. Ditto to everything Jack said. I think I went through every emotion possible in the first half-hour of hearing I had Wegs. And I continue to ride the emotional rollercoaster, 4 years after diagnosis.

I hope you can get excellent care quickly. We've sure had a lot of new members from the UK lately. A few months ago we got a bunch of Aussies. I think the Wegs dog must be a herding breed.

[freakyschizogirl]

Well its cos its a rare disease, people are collecting now obviously. lol.

[Jack]

If you have nose bleeds and crusting you should try irrigation.
Try these threads -
http://www.wegeners-granulomatosis.c...rrigation.html
http://www.wegeners-granulomatosis.c...now-about.html
It works very well.

[freakyschizogirl]

Ya, thanks for that Jack...I use Sterimar as perscribed by the ENT consultants. and Vaseline...as i was told to do. But reading on that thread it says Vaseline is bad??
Who knew.
There are days when the crusting and sinus pain gets so bad i dont wanna touch my nose.
And times when i see my reflection in a shop window or a photo of me all i see is my collapsing nose...

Feeling a bit sorry fr myself tonight, as you might have guessed.
Reassuring tho that people are going through the same as me.