View Full Version : Saw the ENT today

09-25-2008, 11:29 AM
Today I saw the ENT who gave me the preliminary diagnosis. He wanted to know what my PCP had to say about the test results (R.A. factor negative, and ANCA in normal range). I told him the PCP says ANCA in normal range is not enough to rule out W.G. and he wants to run some more tests. The ENT said it was a "very good idea" to press on and continue testing. I also told him I intend to see a Rheumy, and he said that was "also a very good idea". So while he has exhausted his knowledge base about this, he saw enough that he's not convinced I don't have it, even though the ANCA came back normal. He also asked to receive reports from the PCP and the Rheumy so he could be "in the loop" on this.

Considering what others have gone through to get a diagnosis, I am thinking that my experience isn't all that different from others. So Friday I'll get blood drawn and the testing continues.

Edited to add: the ENT said that someday I may need sinus surgery, but he's not ready to take that step yet.

09-25-2008, 10:33 PM
I went down the route of sinus problems followed by surgery in the months before I was diagnosed with Wegeners. All horrible stuff that left me with long standing problems and turned out to be unnecessary.

I was finally diagnosed by the Rhumatology department, but it was way too late by then. They told me that the only way to get an accurate diagnosis was from biopsy results. The blood tests are just indicators.

Get a referal as quickly as you can. If you do have Wegener's, it can cause a lot of damage very quickly.

09-26-2008, 12:49 AM
Jack, I do have my referral but we have a shortage of Rheumys in this county, so I can't get in to see him until October 23rd. In the meantime, my PCP (an internist) is running some more blood work. At least we'll know if the kidneys are alright. I definitely think my ENT was onto something the day he looked up my nose with a scope and mentioned W.G. I have been through a six-month stretch of constant sinus problems and the only thing it responds to is Prednisone.

09-26-2008, 01:24 AM
Hi Terry, mention conducting a biopsy to him. I believe they look for the presence of Granulomas under the microscope, although I'm not sure what one looks like. ;)
In the meantime, the blood tests must be a good thing. I was well into kidney failure before I was diagnosed.

09-26-2008, 02:22 AM
Thanks, Jack, I will do that. I'm hoping that we caught this early enough to avoid the kidney failure thing. ;) It seems that in so many cases, diagnosis before kidney failure is hard to get. A disturbing thing is that without Prednisone, I have no appetite. That is so not like me!

Barbara N
04-07-2013, 02:12 PM
I think I had Wegener's for years before I got diagnosed. I was being tested for another rare disease, Rhodatarula, that you catch in the hospital, like Jack I had lots of unnecessary treatments and surgeries that gave me way more problems then I should have I had two biopsies of the kidneys, both negative when I actually was positive. It is so hard to get a good diagnosis and it is not the fault of the doctors particularly, it seems the WG can hide from everyone except you. I had every test know to the medics three times over a period of several years and in both cases WG and Rhodatarula, it was my little family doctor who diagnosed me in the end.

04-09-2013, 05:03 AM
I think quite a few of us have come to the conclusion that we had Wegs for years before diagnosis. It may have been a "smoldering" thing, or seeming to be recurring sinus infections, asthma, or arthritis... all things that are pretty common in the general population, so wouldn't raise too much of a red flag.

Barbara N
04-09-2013, 04:28 PM
I agree with that, I am sure that I had WG way before they diagnosed me.