much of a pain in the butt does one have to be?

[Lynn]

I have every nasal/hearing/voice symptom of Wegener's. Every one. After diagnosing me with Giant Cell Arteritis, my rheumatologist isn't considering WG as a diagnosis because my ANCA came back negative (even though every credible publication tells us that ANCA alone isn't conclusive.) A CT with contrast by my 2nd ENT came back showing "mucosal thickening" (what else would a CT show?) In your collective knowledge, is there ANY conclusive diagnosis that can be made without a biopsy? And how many ENTs have you had to visit before finding one who was willing to investigate beyond the most obvious diagnosis?

[MikeG-2012]

ANCA didn't mean squat the last time I had a flare up.

My ENT went to bat for me when my sinuses were flaring up and the Rheumy was telling us it probably wasn't a flare due to negative ANCA. When the rheumy saw my sinus damage, he relented, did a chest x-ray, which showed new lesions there, and we started RTX two days later. If your ENT needs further guidance from a rock star of an ENT (mine), have him/her contact: Dr. Anthony Rogerson (https://www.monroeclinic.org/rogerson)

So, negative ANCA does NOT mean that you don't have GPA/Wegs!!

[Alias]

Right, negative ANCA does not exclude a GPA diagnosis. But neither does a negative biopsy, especially if it's a nasal biopsy.

[vdub]

GPA is diagnosed by exclusion, so I'm not really surprised that your rheumy might hesitate to make a determination. There isn't any positive physical marker that specifically points to GPA as a diagnosis, so they have to rule out a lot of other things (such as Lupus) before they make a dx. Is your rheumy treating you with any drugs despite not having a specific dx?

[Pete]

My GPA was diagnosed by elimination as well. I had both a nasal biopsy (positive) and a bronchoscopy (inconclusive) plus CT scans, X-rays, and blood work.

GPA was the only diagnosis that made sense. Since I responded well to treatment, the diagnosis has stood.

I've never had to be a pain in the butt with a doctor. That said, I had a long written list of questions that I took to each appointment. Fortunately, the docs took time to answer them all. They didn't regard this as a waste of time.

[vdub]

I've never had to be a pain in the butt with a doctor.
Same here, Pete, and I've had my fair share of docs.

One of things I have found is that self-dx from the internet is notoriously wrong, not to mention, that it can be scary due to false alarms. The human body is very complex and doctors look for a lot of little tells beyond the obvious symptoms, so hang in there and you'll get a dx. Hopefully, it won't be wegs at all.

Besides GCA can be cured and GPA can't, so, at this point, you have a huge bonus. And if its not GCA, then you're still ok as it looks like the treatment for GCA is the same as the treatment for GPA. win - win

[darl-p]

You ask “how much of a pain in the butt does one have to be? (http://www.wegeners-granulomatosis.com/forum/new-member-introductions-stories/5390-much-pain-butt-does-one-have.html)”.

I can tell you where my well being is concerned I can be a major pain in the butt. I have been dealing with this for 9 years and last year things where really stable and my lead doc was a nephrologists and I though it was time to transfer to a Rheumatologist for maintenance. The first thing the Rheumy wanted to do was change all my meds. After he accomplished this I have been in a tizzy. I tried to get each of my other specialists to intervene, to no avail. I finally took it upon myself to self-medicate with a high dose of prednisone to combat the pain. I emailed the nephrologists what I had done and also my PCP. The PCP suggested that maybe I should get a second opinion. She set me up with a Rheumatologist who I met with and the new one was a bit amazed that I would take action on my own. I told her that in the absences of a direction by the original rheumy I got desperate. She ordered a battery of tests and will begin to reassess from scratch and monitor me very closely, something that has not happened since I transferred to the Rheumatology department. It does pay to be a pain. But .. she said she should cancel my internet connection so I would not be searching for self diagnosis. She did give me big hug at the end of the appointment, so I guess it was OK

[Jaha]

I have been ANCA neg from the beginning. I was dx'd after a lung resection, taking 30gms of my left lung for biopsy at a local hospital, along with many Ct scans, they were not able to identify. I got the biopsies sent to a major facility, and had more test and Ct scans there, where a team finally dx'd me. I was a very sick puppy by that time. In all it took about 8mos to find the right specialist to solve the puzzle. Wishing you all the best.