What what your Doctor's "a-ha!" test?

[Terry]

Hi everyone! I need your help with something. I am still in the stage where we suspect I have W.G., but have not proven it yet. That said, I have so many of the symptoms that respond so amazingly well to Prednisone, at this point, I need to be convinced I don't have it.

So my question for you is this: what was the test (or group of tests) that caused your doctor to conclude you have W.G. and proceed to treat you for it? My initial ANCA test came back negative, but from what I read, that is not at all unusual and certainly not enough to walk away and consider it ruled out.

Thanks for your input! I am in awe of how much you all know, and your answers will be very helpful to me!

[andrew]

For me it was a kidney biopsy that proved it. However, the biopsy was done based on the blood tests that revealed ANCA levels that were sky-high. Anecdotaly they also saw elevated creatinine levels and other issues which, when looked at together (rather than separately as they had been before) guided them towards diagnosis.

I hope you get a diagnosis soon. As is typical with WG, it can take ages to finally nail it down

[Terry]

I hope you get a diagnosis soon. As is typical with WG, it can take ages to finally nail it down

Andrew, I am learning that diagnosis seems to be a process. I think the ENT is definitely on to something, and hoping that by the time I see the Rheumy, there will be enough empirical evidence to get a firm diagnosis. The past several nights I've been having palpitations that are relieved by taking a potassium supplement. That may or may not be related to anything else, but I'm taking note of every symptom I'm having, whether it seems related or not. A month ago, I just thought I was falling apart from head to toe, with [what seemed to be] a chronic sinus infection, tinnitus, trigger fingers, and knees that were so bad I could barely walk. Now it's starting to look as if it's all connected, and I think that was a pretty astute call on the part of my ENT.

[andrew]

Andrew, I am learning that diagnosis seems to be a process.

You said a mouthful there Couldn't agree more.

I'm taking note of every symptom I'm having, whether it seems related or not.

Something that I should have done myself at the time. It may have helped when I walked into hospital.

A month ago, I just thought I was falling apart from head to toe, with [what seemed to be] a chronic sinus infection, tinnitus, trigger fingers, and knees that were so bad I could barely walk. Now it's starting to look as if it's all connected, and I think that was a pretty astute call on the part of my ENT.

I think most of the prople reading this will be nodding in agreement. Many seemingly unrelated symptoms, all treated separately, suddenly being recognised as acting together and then....Ah-Hah!

[Rodger]

Terry,

Not sure if you read my new member post from last night. I had the sinus symptoms and that has been the limit of it to date. My infectious disease doctor suspected an autoimmune condition because of the odd bacterial infection raging. She tested my ANCA levels and they were extremely high. My ENT was already to do a debridement of damaged and dead sinus tissue so she immediately ready for the sinus tissue biopsy.

My rheumatologist said to be certain he could have biopsied the small lung granuloma, but did not want to stress my body further when all evidence pointed to WG. In the end I'm glad we did not do the lung biopsy.

[Terry]

Rodger, I wish that for me it had been so simple as having abnormally high ANCA. Things never seem straightforward for me. I do, however, have three other autoimmune problems, so it's not a stretch for me to believe there's a fourth one. After only three days off the Prednisone, my sinuses are feeling all stuffy again, I have the presence of thick green mucous, my knees are starting to hurt again, and I am beyond exhausted.

[RCOSSIO]

did you already see the Rheumy...I hate to hear about your sense of ammonia smell which sounds like preliminary renal deficiecy.. leave now to rheumy!!!!!!!!!!!!

[Terry]

Richard, I wish I could get in immediately , but the unfortunate reality is that the only way I'd get to see a Rheumy right away is to end up in the E.R. From what I am reading here, none of you got a definitive diagnosis until you were in crisis. Unfortunately, it doesn't look like my diagnosis will be any different. Fortunately, the ammonia smell isn't a constant thing. I do have a nagging low backache, though. I have called the Rheumy's office twice to see if they've had any cancellations, but there have been none. They have me on their list of people to call if there is one.

The good news is that tomorrow blood will be drawn. The doc wanted me off the Prednisone for 5 full days before I did the blood draw so there would be no way for the Prednisone to skew the results. He's doing a comprehensive metabolic panel, which includes the kidney tests, along with some comprehensive stuff on my immune system, so if anything is up with the kids, we're going to find out.

Both my PCP and ENT believe there is an autoimmune thing going on, so it's just a matter of time before they figure it out. As I said, I have so many of the symptoms that respond so well to the Prednisone, they need to convince me that I don't have it, because as far as I am concerned, I do have it and they need to figure it out.

[jola57]

Hi Terry, I would insist on a biopsy - its the best way to see the granulomas which identifies WG -lungs, kidneys, sinuses, nerves or muscles can be biopsied. Talk to your rheumy. With the symptoms you mentioned it does look suspiciously like WG
Jolanta

[Terry]

Hi Jolanta! That is my plan - to go to the Rheumy armed with all the tests that have been run so far to ask him to order a biopsy. In this case, it would have to be my sinuses since that is the area being affected right not. I haven't read anything about drawing fluid off of joints and using it for diagnosis, have you? I'd surely like to get in to see him sooner, and maybe I will still be able to, but for now I'm using this time to get testing done and gather up the medical records. It's a shame that diagnosis has to be so difficult.