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MrT
01-21-2016, 10:11 PM
Hi everyone,

Sorry I skipped the introductions, I'm 29 and was diagnosed 2 years ago. Initially I responded so well to treatment that I didn't think this immune disease mumbo-jumbo was a big deal. However like everyone, my condition has taken many twists and turns since then. As I am weeks away from becoming a father, I figure I need to get to know this beast a bit better.

Was hoping some of the Aussies could recommend any Wegeners Specialists ideally in NSW who I might be able to make contact with. My ENT and Rheumatologist are quite good but I'd love to go further with someone who has extensive experience with this particular issue.

Thanks everyone, reading all your stories and positivity has done wonders for mental well-being and ability to be optimistic and know I'm not alone in this condition.

- Michael

mishb
01-21-2016, 10:19 PM
Hi Michael and welcome to the forum.

There are many great WG specialists in NSW, it just depends where you are.

debra
01-22-2016, 03:44 AM
Michael, hello... Congradulations, on becoming a dad!!! Good for you, wanting to go further in treatment... Also happy, you have real doctors, working with you... Others will be able to help, in you're question, I'm sure... Good luck, dad! Deb...

Birdie
01-22-2016, 03:47 AM
reading all your stories and positivity has done wonders for mental well-being and ability to be optimistic and know I'm not alone in this condition.

There are a few people here who come across as a bit whacky, it's an act, optimism maintenance... or is it?

I think my standard advice is worth repeating, learn all you can, now, before you need to know it. It's the only way to make wise choices and stay ahead of the Nazi doctor.

Oh, welcome to the forum.

debra
01-22-2016, 03:56 AM
Birdie, why do I feel this comment, may be directed at me? Nah... Not me... Ya, stay ahead of the Nazi, doctor... Good advice.. Debra...

andrew
01-22-2016, 07:45 AM
Hi MrT and welcome.

There are several great specialists in Sydney. I see Dr Stephen Adelstein (Immunologist) at RPA. Where abouts in NSW are you located?

Swb21188
01-22-2016, 08:53 AM
NSW is pretty large to better know who to suggest, where in NSW are you?

MrT
01-22-2016, 01:55 PM
Hi everyone, thanks for the replies.

I live in Penrith but like I said I'd be willing to travel if it meant meeting with someone who can give me some useful information.

I am stuck between an ENT who gives me the worst case scenario of everything and a Rheumatologist who is super positive about everything so I try and balance my own thoughts somewhere in the middle.

Birdie
01-22-2016, 03:38 PM
I am stuck between an ENT who gives me the worst case scenario of everything and a Rheumatologist who is super positive about everything so I try and balance my own thoughts somewhere in the middle.

I spent about 3 1/2 years trying to put it all together, and did a fairly good job of it because I had access to a university medical library. I could have just come here and asked my questions. In the first week here I learned much more, like Wegener's is survivable long term and how to survive it.

annekat
01-22-2016, 04:03 PM
Welcome, MrT. I'm so thankful I found this forum before I even knew for sure that I had WG. Though there's a lot of info on the web, this seems like the most sane, realistic, comprehensive, and compassionate source of info anywhere. I'm sure it has saved my sanity and maybe even my life, since there are so many things I wouldn't know to ask a doctor and might not get from him or her, if I had to depend on them for information. Best of luck in finding one, or a team of them, whom you really do trust and feel you can depend on. But then, let us know, and keep coming to the forum! :smile1: