New Member

[Rachel S.]

Hello all. I was officially dx'ed last week. It has taken a year to get this far. My neurologist was the first to suspect I needed to see a specialist. The random ENTs, pulmonologists, infectious disease specialists, immunologists, etc. were all confused. Even the first rheumatologist was unequivocal that I could not have WG because my ANCA was not abnormal. About that time I found your forum, you all give such wonderful advice. I cannot thank you enough. By the time I got an appointment with a WG rheumy, I was worse, but I had someone who took me seriously.

The day I was officially diagnosed I felt almost relieved. I finally have an answer and a plan. The meds are obnoxious, but I'm getting by. Thanks again for sharing your knowledge, without you, I wouldn't have known to ask some important questions.

[Dirty Don]

Welcome to this little world...almost an exclusive one albeit! Yikes! As you've found out, great advice, lots of knowledge, and tons of experience for you to peruse and apply as needed. I know the feeling of 'finding out' and having a plan...not one would like, but, nevertheless, a plan on the road to remission. The best to you Rachel S. and keep on asking & sharing on here!

[pberggren1]

Rachel, I take it you go to Emory? Which doc do you see there? I know a couple people that go there.

[Sangye]

That's great, Rachel. I'm relieved that you finally got a dx and are getting proper treatment! :thumbsup:

[annekat]

Welcome, Rachel. We are truly blessed to have this forum, as you have found out, and I'm glad you are here if you have to have Wegeners. Keep us posted on your progress.

[mishb]

Hi Rachel,
Sorry you have to be here but very glad you found us all.

I'm glad you finally got someone to take some notice in you......we all know what that's like.
At least now, things will start to get better.

Take care and remember to ...........

[Psyborg]

Welcome to the family Rachel.

[Pete]

Welcome, Rachel!

Yeah, the disease sucks, but you can co-exist with it. Glad you have a wegs specialist. I hope you're being advised to live your life defined by what you can do instead of what you can't. Good luck and keep us informed of your progress.

Pete
dx 1/11

[KathyB]

Welcome, Rachel. This forum has been so invaluable to me, and hopefully, will be for you also. I still remember the day I was diagnosed -- what a relief finally knowing what was going on in my body and creating a plan to combat this disease! Sounds like you are in good hands!!

KB

[Jennie]

Hi Rachel and welcome to the forum. The members here are so helpful, kind, understanding, knowledgeable. I continue to be so grateful to everyone here for their comments and support. Good luck with your treatment.


Jennie

[Debbie C]

Hi Rachel..like everyone said you have found a good place for info,support and a shoulder. This is a terrible disease but you just have to learn to life with it now.It can be tuff at times so keep us informed on yr progress.

[RudiK]

Hello Rachel, welcome to the forum. I second what everyone else has already said, WG is a terrible disease, one that you just have to learn to live with. But, this forum has some excellent and very knowledgeable members that are always willing to help with suggestions and advise.
Good luck.
Rudi K

[Victoriaitsnosecret]

Hi Rachel,
I'm newly diagnosed too. Around 3 1/2 weeks. My pulmonologist mentioned Wegeners the first time he saw my chest scan. But it took time to get diagnosed. I had 3 negative ANCA tests and lung tissue was inconclusive. It is a relief to finally know. This site is great. People who experienced what you have and not just a doctor telling you.
Good Luck.

[HopeinTN]

Glad you found us and happy your are finally in good hands.

[NicShaf]

Welcome Rachel! Glad you found us, lots of info on this site.