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Thread: In process of diagnosis

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    Default In process of diagnosis

    I've had lung and sinus issues for years. I started seeing a new pulmonologist about a year ago and we have now reached a likely Weg diagnosis. He is making a referral to Cleveland Clinic for me.
    Question: My lung biopsy showed my nodules to be granulomas but he said it did not show vasculitis. He is sending that off for a second opinion. Does anyone have any knowledge or experience with this? Would this mean it is not as progressed or just a mistake?
    Thanks!

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    Default Re: In process of diagnosis

    @MINDYB77

    Vasculitis is often difficult to diagnose. I was diagnosed more by a process of elimination. The pulmy leading the team of docs who was treating me tentatively concluded I have GPA. They said an open lung biopsy (and another week in hospital to recover) would be more conclusive. Instead, I opted to begin treatment of GPA, and I started to get better. It was a tough go for about six months. I was pretty good for another six months before I had a major relapse that set me back for another six months. I’ve been in a stable remission since 2013.

    I’m glad your doc is referring you to Cleveland Clinic. You’ll get excellent care there. I see Dr Alexandra Villa Forte. She knows vasculitis, she’s thorough, and she listens.

    Let us know about your progress!
    Last edited by Pete; 10-08-2019 at 07:40 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: In process of diagnosis

    Thank you! I had actually been reading and found this forum prior to my follow up appointment from my biopsy. I saw a comment you made about the 2 drs at Cleveland Clinic and I printed their information and took with me. That's why he is referring me there. So thank you for that.
    I'm about 4 hours from Cleveland but I've been there for 2 previous sinus surgeries.

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    Default Re: In process of diagnosis

    Welcome, Mindy, and it sounds like you are on the right track. Pete is an excellent source of information, and you are lucky to be able to go to the Cleveland Clinic, even if it is a 4 hour drive. Good luck and keep us posted.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: In process of diagnosis

    Yes, I was so thankful to see his post and then research the drs at CC. It's a long drive but we've done it in a day for follow up appointments, so not terrible. My husband does the driving mostly, anyway. Thankful to have this group, too. I'm just beginning to read through posts to try to educate myself.

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