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Thread: Diagnosis pending - new member from SD

  1. #11
    Join Date
    Jun 2010
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    Richmond, MO
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    Linda...I too am new to this forum...just recent diagnosis of WG with tracheal subglotic stenosis with right jaw sinus and par gland involvement...and please trust this group of fine people...they have been my saving grace and finding a true WG doctor is the key....I read my records and they suspected WG back in Nov 2009 but I could not get a bronch done to confirm the stenosis ...then after it was confirmed I still did not get a go ahead to see a specialist til after the surgical repair.....and it was still not made to be an urgent matter.....when I had a flare up with the tracheal stenosis and a URI that would not go away did everyone get all excited...lucky for me I saw a WG specialist the day prior to being scoped again so the coordination of services was great...I am lucky to have a specialist in my area....From all I have learned WG can be a very scary disease and without proper aggressive care it can be fatal...so ask all your questions...rant and rave ....and let them help you all they can...please try to have a good day ...I know this is scary

  2. #12
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    May 2010
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    Hi Linda, my son was just diagnoised last month after being admitted into UCLA in kidney failure. He saw 3 pediatric rhummy specialists who all said he wasn't sick enough to have Wg. Up until the kidney involvement he had no other symptoms but joint pain and a pos ANCA. You just never know with Wg. Please see a specialist in Wg. UCLA is also on the Vasculitis website.

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