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MINDYB77
10-08-2019, 02:04 AM
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!
Pete
10-08-2019, 02:51 AM
@MINDYB77 (https://www.wegeners-granulomatosis.com/forum/member.php?u=11198)

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!
MINDYB77
10-08-2019, 03:19 AM
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.
annekat
10-08-2019, 04:22 AM
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
MINDYB77
10-08-2019, 07:07 AM
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.