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  1. #1
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    Default New Member

    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.
    Rachel - dx'ed seizure disorder 1999, dx'ed WG 07/26/2012




  2. #2
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    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!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #3
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    Rachel, I take it you go to Emory? Which doc do you see there? I know a couple people that go there.
    Phil Berggren, dx 2003

  4. #4
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    That's great, Rachel. I'm relieved that you finally got a dx and are getting proper treatment!

  5. #5
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    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.
    Anne, dx'ed April 2011

  6. #6
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    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 ...........
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  7. #7
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    Welcome to the family Rachel.
    ~ Bob

  8. #8
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    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

  9. #9
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    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
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  10. #10
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    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

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