what are they looking for in your nose to diagnose you with Wegners.

[maria garcia]

My daughter had an x ray on her nose and chest. chest was fine but nose showed some thickening is this part of Wegners? What exactly are they looking for in the xray?

[pberggren1]

I don't think an x-ray of the nose will show much but inflamation that along with other things can lead to a diagnosis of Wegs. But if a biopsy is done on the nasal passages it is granulomas they are looking for.

[maria garcia]

Apparently they didn't find what they were looking for( which is good) but they saw some thickening and didnt make a big deal. . I hope they do a Biopsy to make sure. she still hasn't been diagnosed as for Wegners or P anca Vasculitis or any of the horrible diseases that come with this immune disorder.

[JanW]

Sorry to tell you but it was the thickening (I believe of muscosal membranes, but I honestly don't remember now) on a CT scan in the summer of 09, that led ENTs to suspect that I might have WG. The radiology report said that I should be worked up for WG (although my pulmo at the time -- who was still claiming that I had asthma -- didn't take it seriously and I didn't end up getting a workup for another six months). I think it's very rare and definitely on the list of things for the dx of WG. It was shortly after that that the bridge of my nose started its slow collapse, but, again, I don't know whether the two are related.

[NicShaf]

I'm not sure what they would be looking for in an x-ray. I had a sinus CT scan done to look for inflammation.
The sinus biopsy is very unreliable, they will most likely not find any granulomas there, but it is minimally invasive and easy to access, so they may do one just to check, they did for me after my lung biopsy came back inconclusive. The lung and kidney biopsy's are more likely to show granulomas.
What is making them hesitate with a diagnosis? Besides Wegs and P-ANCA Vasculitis, what are they looking at?

[maria garcia]

Nicole She is P anca and Mpo positive. there trying to find if its affecting her organs and also if its Wegners. The Dr. just keep saying P anca is not a DX and we are looking for one. Her eyes are red but was diagnosed with just Episcleritis not Screrits . The doctor was afraid she had Scleritis and its a blinging condition. I don't feel comfortable with the DX. of the eye bcse with episcleritis it not soppose to last for six months.But two different Dr. have diagnosed she didn't have Scleritis.Now with the sinus there not making a big deal about the thickening. Im just very confused, upset , frustrated. I don't want her to be misdiagnosed! I have another appt with Rhemo. next week and I guess I will go for a second opinion depending what he says. I have a sucky insurance that does not help my frustration.

[Chris G]

Thickening of the sinus mucosa is a symptom of WG, but it is not by any means a confirmation of it. Early on in the disease, you will find thickening, rather than granulomas and damage. Thickeing is all that was revealed on my sinus ct. At that time, the disease was busy attacking my ear, and causing nose bleeds, headaches, loss of my voice, etc. That, along with an abundance of other wg type symptoms (past and present), lead to the wg diagnosis.

Ordinarily, episcleritis does not last long - I've seen it referred to as "self-limiting", which means that it just clears itself up and goes away. However, if the episcleritis is due to systemic inflammation from an auto-immune disease, it CAN last for months, and steroid drops may not be of any use. Do they have her on steroid drops currently? And is it helping?

[maria garcia]

I'm not sure what they would be looking for in an x-ray. I had a sinus CT scan done to look for inflammation.
The sinus biopsy is very unreliable, they will most likely not find any granulomas there, but it is minimally invasive and easy to access, so they may do one just to check, they did for me after my lung biopsy came back inconclusive. The lung and kidney biopsy's are more likely to show granulomas.
What is making them hesitate with a diagnosis? Besides Wegs and P-ANCA Vasculitis, what are they looking at?

They are looking for a Diagnosis. My doctor says positive P anca and MPO is not a diagnosis so they are checking her body organs.

[delorisdoe]

They are looking for a Diagnosis. My doctor says positive P anca and MPO is not a diagnosis so they are checking her body organs.

ok, i am the last person to say this because i hate the idea of telling someone to tell the doctors what to do but.......you need a wg specialist. lol. seriously. regardless of whether it is c anca or panca the treatment is the same. It sounds to me like maybe they dont want to give her unnessary treatment without a biopsy for diagnosis. That may be okay but If they were a vasculitis specialist they would probably treat her even whithout the biopsy. Also, i think they would be explaining things better to you. Having said all of that I would not know how to go about finding a proper doctor. I have always just assumed mine were fit for the job. Do you bring someone else to the appointments? I remember when I was diagnosed and told what I had I could see my doctors mouth moving but i did not really hear what he was saying. Maybe if someone else went to her next appointment with her-or is she still in the hospital? This person could right down all of your questions and would probably be more likely to hear what the doctors are saying. Moms tend to panic and hear the worst.

calm down, ask questions you have written down and listen to your daughter. If her symptoms worsen a diagnosis will most likely come quicker.

[maria garcia]

Thickening of the sinus mucosa is a symptom of WG, but it is not by any means a confirmation of it. Early on in the disease, you will find thickening, rather than granulomas and damage. Thickeing is all that was revealed on my sinus ct. At that time, the disease was busy attacking my ear, and causing nose bleeds, headaches, loss of my voice, etc. That, along with an abundance of other wg type symptoms (past and present), lead to the wg diagnosis.

Ordinarily, episcleritis does not last long - I've seen it referred to as "self-limiting", which means that it just clears itself up and goes away. However, if the episcleritis is due to systemic inflammation from an auto-immune disease, it CAN last for months, and steroid drops may not be of any use. Do they have her on steroid drops currently? And is it helping?

Chris next week is the ENT. appt. Im taking her on my own bcse the Rhem. did not send her. I also found out today when she went to her General phyisican that her hearing is bad. The doctor used almost like a gun devise to check( not a real hearing test) so this was very upseting bcse her symptoms lean over more to Wegeners. My question to you is what are they going to be looking for in her ear? Now its her nose and ear and eyes. Im just wondering what kind of test will diagnose Wegeners. I read somewhere in this blog that a nose biopsy is not always accurate. So im hoping the ENT. has some experience with Wegs. I asked and the secretary said yes bcse her Pedetrician had no idea what Anca was. So im hoping her gun like devise is also not accurate and her hearing is not bad trying to stay positive but not ignorant.

[Sangye]

Maria, the ENT will likely do a proper hearing test. If not, you need to demand one. It's necessary to have one done if there is any concern about hearing loss, so it can be used as a baseline in the future.

[Chris G]

Chris next week is the ENT. appt. Im taking her on my own bcse the Rhem. did not send her. I also found out today when she went to her General phyisican that her hearing is bad. The doctor used almost like a gun devise to check( not a real hearing test) so this was very upseting bcse her symptoms lean over more to Wegeners. My question to you is what are they going to be looking for in her ear? Now its her nose and ear and eyes. Im just wondering what kind of test will diagnose Wegeners. I read somewhere in this blog that a nose biopsy is not always accurate. So im hoping the ENT. has some experience with Wegs. I asked and the secretary said yes bcse her Pedetrician had no idea what Anca was. So im hoping her gun like devise is also not accurate and her hearing is not bad trying to stay positive but not ignorant.

Maria - the gun-like device does nothing other than to check the pressure in her ears. It tells whether the ear drum is being drawn in, or being pushed out due to negative or positive pressure in the middle ear. Tell the doc that wg is suspected, and you need her thoroughly checked out for signs of it. He should do a full hearing test on her, and check everything out top to bottom (so to speak) - ears, nose, throat (eyes too). He should scope her nose, and throat to look for abnormal looking tissue and inflammation.

[freakyschizogirl]

Maria Garcia, please try and stay calm. I know this is very upsetting for you. The important thing is that she is having all these tests and they are trying to give you a firm diagnosis. Wishing you the very best luck that you get the answers you seek .