ANCA w/o Weg???

[annekat]

Thank you all again. I feel the issue is the pulm is trying to rule out GPA prematurely rather than ruling out other things.

Interestingly, I asked a relative in the medical field if the CT with contrast/no contrast could lead them to think the issue cleared up. She said contrast lights up "lesions from inflammation", so in actuality nothing may be cleared up, but it may have appeared so due to the second not having contrast....

Still working away at this.

My pulmy seemed to want to think up all kinds of things that it could be besides WG. Like endocarditis, something that recreational IV drug users get. I've never ever been an IV drug user.

I only had the one CT scan of my lungs, where they saw the numerous "cavitary lesions" that could indicate WG. My pulmy now says that chest xrays will still indicate the presence of these lesions, so they don't really go away, but the inflammation surrounding them is gone. Or at least that's what I think I remember him saying. In any case, my lung issues appear to be cleared up, and he doesn't see the need for any CT scans currently. It has been awhile since I had a chest xray, too.

[windchime]

I agree with the others that the ANCA is inconclusive. Because I'm new to the forum and had read up on things here I asked my pulm doc about the test. He had not requested it for me and I wanted to know why. He also said that it is inconclusive.

The reason your inhalers may not work is because you may not have asthma. I was misdiagnosed for years with asthma and found little relief from my inhalers, both albuterol and Asmanex (steroid). Good luck with everything. Find a good Wegs doc I cant stress the importance of that enough. If you dont get the correct diagnosis you could "smolder" for years. Check with the doc about taking Mucinex to thin the mucus. Makes it a little less "chokey".

[Woodsyartist]

You have all been so helpful. I am building my case for my Drs to continue to look into GPA despite their reluctance.
My next question (which I thought about putting as a new post, but hopefully some of your who have already helped will know.
One Dr said my sed rate was not elevated and this indicates general inflammation. Does the sed rate have to be eleveated to be GPA.

I feel like I am line by line going through each of their excuses....though it is exhausting and frustrating..
Thanks for all you help in advance!!

[Pete]

Woodsy,

It seems to me that you no longer trust your doc. Might be time to look for someone else who's a bit more open-minded.

Good luck and better health!

[Woodsyartist]

I do not know if it is trust, but I definitely feel like I have to know as much as I can to ask the right questions. I've already been through a few doctor changes etc. It does not help that though I feel "yucky" my symptoms are not severe, so my appts have plenty of time in between to ruminate about all the things that have been said, seen etc.