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Thread: Advice Please

  1. #11
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    Quote Originally Posted by Jennie View Post
    Hi Joanne

    Sorry you are going thru all this. I have had similar symptoms with my throat......trouble swallowing, choking on food, feeling like something was stuck back there. It took referrals to 3 different ENT's and various other specialists to get a diagnosis of Wegener's. The first two ENT's said they had never seen anything like it when they took a look with the camera down my throat. Finally I got referred to my current ENT who ran all kinds of tests and biopsies and finally a diagnosis of Wegener's was made. I have been on Imuran for two years now and my throat continues to improve. So far I have been lucky to not have sinus issues.

    I hope that you will go to your appointment in Manchester and keep pushing for a second/third/fourth ENT opinion if necessary to get the answers you need. There is someone out there who can help! Please keep trying. We are all here for you.

    Jennie
    I agree that it is hard to trust a doctor to recognize Wegs in your throat if they have never seen such a case or even heard of the disease. I just had this experience with local surgeon who scoped my esophagus but still didn't think it necessary to send my biopsy to Mayo as I requested even though he had never heard of GPA. It is sad and scary, but important to remember that some times we have to do a lot of searching and try a lot of doctors till we are lucky enough to find one that recognizes our symptoms and can diagnose us correctly, and hopefully has some experience in treating Wegs too, or at least has the good sense to consult with recognized expert on our treatment. That is why the most important common theme on this forum is to get oneself to center that is recognized as having expertise in diagnosing and treating Wegs. It is literally a life and death matter---OURS!
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #12
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    Sorry I'm late to the thread. My advice follows very close to the rest though. I dose sound like a flare to me. See your specialist. But let them do the diagnosis especially if he is familiar with GPA . Since this is a multi symptom disease it is possible for misdiagnosis. Having said that its important to make sure he dose actually diagnose you. Even if it isn't GPA it sounds like you need treatment of some form it isn't going to go away on its own. My question for you is has anyone put you on any drugs most particularly Prednisone. We all hate it but the fact is your symptoms even if you don't have GPA mimic the flare. And I would bet anything Prednisone with the proper dosage will at least start to control the symptoms until they confirm your diagnosis.

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