How was everyone "officially" diagnosed?

[Mel4]

My doctors are disagreeing on whether I need a lung biopsy. From what I've read I understand that a biopsy is the only "official" way to prove Wegener's. But, with blood tests and symptoms two of the doctors feel confident that this is what to treat. Anyway, I'm curious how many people had biopsies for diagnosis or how many had blood tests or how else you found out! Thanks in advance for sharing:)

[Bing505z]

They used a sample from my sinus and a sample from my lung to confirm.

[SpaceflightAddict]

There was no single test that was conclusive in my case. I had two inconclusive nasal biopsies and a negative ANCA test, so I did not make it easy on them. The doctors ended up testing me for everything under the sun, testing again, and finally ruling everything out until all that was left was Wegener's. In the end, I was "officially" diagnosed by a doctor who is an expert in vasculitis, based on consideration of all of the symptoms that I presented with.

[Pete]

I had a sinus biopsy and a bronchoscopy tissue sample that apparently suggested GPA/wegs, but they essentially eliminated other possible diagnoses. They treated me for GPA/wegs and I got better. In our minds, it was the correct dx.

[vdub]

Like Pete said, "they don't really diagnosis you as much as they rule out other possibilities". My diagnosis was based on all the symptoms I had, primarily my sinus "infection" that never went away, but also fatigue, aching, etc. My confirmation or, at least, the strongest suggestion that it was wegs was the biopsy of my pituitary. Even today, the docs can't say with 100% accuracy that I have wegs, but the evidence rules out everything else, for the most part, sort of.....

[Jaypfei]

I had a lung biopsy, as well as a mastoidectomy. Both showed granulomas. That along with ANCA gave me a Dx's of Wegs.

[lag713]

My rheumatologist used blood tests that consistently showed inflammation (ANCA and other more general blood tests) and my symptoms to diagnose me. The ENT and pulmonologist agreed with the diagnosis and did not feel I needed to have a biopsy. I had a clear CT scan of my lungs. I was caught early and likely would have a negative biopsy result. I only have disease activity in my sinuses (as far as we can tell for now). I had many different blood tests to rule out other diseases (i.e. lupus, lyme disease, hepatitis, other forms of vasculitis, etc.).

Symptoms at dx: joint pain, swelling, and stiffness, fatigue, post nasal drip, sinusitis, and other sinus and nonspecific symptoms
Frequent fevers and illnesses months before my joint pain came on which fits the typical onset.

[annekat]

I had both lung and sinus involvement, and my dx was made by a positive nasal biopsy. If it had been negative, then perhaps they would have done a lung biopsy, but I had recently developed a saddle nose, which might have gotten me off the hook and allowed them to go ahead and treat me based on my symptoms and the lung CT scan showing cavitary lesions. In fact, after seeing my nose, my ENT was like a kid in a candy store and stayed late to get my nasal biopsy done on the spot; he was sure I had Wegs. I exaggerate about the kid in the candy store; he was actually very apologetic for not having thought of WG in the 2.5 years leading up to this, but there was an undercurrent of excitement at finally figuring out why I'd had so many sinus infections that just came back after treatment.

[vdub]

I forgot about my lung CT. I guess it showed moderate damage. I was declared a wegetarian before my biopsy, tho....

I'm glad I wrote down my story when I did. 4 years has flown by and I couldn't possibly remember everything that went on had I not written it down.

[me2]

I was diagnosed with a sinus biopsy- 36 years ago. Turns out they were right.

[windchime]

I had a positive open lung biopsy.

[Mel4]

Thank you all for sharing! I'm glad to know that the dx is done in a variety of ways. They can not do a CT scan or MRI b/c of the baby...so that might put some more things in perspective once I get that done. Thank you!

[drz]

A kidney biopsy confirmed what was said to be a 99+% probability of Wegs.

[RudiK]

Docs used kidney biopsy and blood test to diagnose.

[eyeopps]

It took a while but mine was confirmed with CAT scans of lung and a kidney biopsy.

[mishb]

Blood test results, sinus ct and symptoms resulted in a diagnosis of WG.............a sinus biopsy confirmed it

[renidrag]

Two bronchoscopies and ruling out everything else. Just lung involvement.
Dale

[LisaT]

My ENT diagnosed by symptoms/appearance of my nose and throat with scope. The other docs weren't sure but seem more convinced because the treatment is helping. So backwards--diagnosis through treatment. Makes sense to me when leaving 'possible' GPA/WG untreated has such dire consequences. Good luck!