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Thread: Second Opinion

  1. #11
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    Default Re: Second Opinion

    Masha,
    Great. That was the name I found when doing some research too. Hopefully it won't take to long to get an appt. Just waiting to hear back from them.

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  3. #12
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    Default Re: Second Opinion

    You are relatively close to both Rochester (Mayo) and Cleveland, if there is not a qualified specialist closer to you.

    Based on my personal experience, I would think twice about the nasal biopsy; it is an invasive procedure and can cause permanent harm, as it did in my case. If the serology is convincing for vasculitis, there may be no need for it.

    Both of the physicians Pete mentions are highly respected specialists in GPA.

    Best wishes

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    Default Re: Second Opinion

    I would also recommend to convey a sense of urgency because your daughter needs see the Weg specialist within a week instead of several months, these doctors are very few and tend to have long waiting lists.

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  7. #14
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    Default Re: Second Opinion

    Hope you get an appointment and some answers soon. It very much sounds like Wegener's, but even if it's not, you need to get to the bottom of it.
    Keep us updated with how you get on.
    Diagnosed April 1995

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  9. #15
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    Default Re: Second Opinion

    Welcome to the family, Christine. I am glad you are going for a second opinion with a vasculitis expert.

    It sounds like wg symptoms. Wg can be smoldering for years while one can have normal labs. But the symptoms are there, and it should be treated.

    Also, I agree with Tom about avoiding the nose biopsy: I had it twice and it turned out negative. False negative. But docs considered it and delayed a serious treatment for my wg until the bridge of my nose collapsed and I developped a saddle nose.

    A real WG expert will know to diagnose it, even when the labs are ok. Make a list of all the symptoms and if there are anything else which might be related. For example, I had gums bleedings and rash which were wg related.

    Sending prayers to your daughter and you. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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