asking the experts...

[Nancy-S]

I received an email from another of Dr. Koenings patients last week. She saw him for the 1st time in 2006, and at that point he did something similar with her. He told her he didn't think she had Wgs and sent her away to come back for monitoring (he told me he didn't see active wegs and to return every 3 months, he wouldn't say yes and wouldn't say no). Since then she went full blown and eventually received treatment.

I figure I'm in the same boat. Hoping it never fully awakes, but educating myself in the event that it does. My newest symptom is a bright red irritated throat. I've seen an ENT and she says there's no infection. Its been this way for almost three weeks.

Is the throat tissue something that might be biopsied? I would need to find a new ENT since this gem told me to stop watching for Wgs, it will find me. I'm sure my family doc would facilitate it. I'm patiently waiting for the throat to calm down, although its as lively today as it was three weeks ago. I still have knee and ankle pain. Ear pain too. But the ear has calmed.

[pberggren1]

You are a tough case for sure Nancy. Biopsies for Wegs on the throat tissue is rare but can be done. If you continue to get worse I would contact Dr. Koening right away. It would be interesting to see how this other Weggie of his is making out now and how she first presented and what treatment she has had. Is she on the Forum here or on FB groups?

[Nancy-S]

She's on a FB group. I reached out to her months ago because she worked at U of U and I wanted feedback about the hospital. It took months to get an answer, I think she said my message went to her spam folder.

She still sees him and loves her ENTs there. I'll have to reread her email. The info was super limited. She did say she had lost all hearing in one ear within two months of initial visit. It was fast.

If the throat is not common, I probably won't worry too much about it. Last labs were in Nov. So ill get those done quick just for reassurance.

[JanW]

Nancy - they will biopsy the throat if they happen to be in there anyway - this is what my specialist did at the same time as he did my dilation -- and got absolutely nothing. And I have WG (in remission now).

As he says the gold standard for diagnosis is biopsy, but you get more than 80% of the way there on symptoms and blood tests (and clinical presentation in my case subglottic stenosis and saddle nose), and that's definitely enough to be treated. For what it's worth my rheumy has a patient with positive bloods but no symptoms and she has not been treated. She was dx via biopsy when she went to the ER with an uncontrolled nosebleed, but that only happened to her once.

[Nancy-S]

For what it's worth my rheumy has a patient with positive bloods but no symptoms

Thanks Jan. I'm curious, without symptoms, why did he run blood? I find interest in that fact because I had such a negative conversation with a local ENT (no wgs experience). I went to her with sinus and ear problems, and she was terrible, awful. I told her I'm C-ANCA/PR3 positive and for that reason I'm vigilant with any new symptom. Her reply was something about because we don't know how many people with C-ANCA are running around without a disease she disagrees with me being vigilant and to be assured if it's gonna happen, it will happen.

All I know is that I have confirmed blood work C-ANCA/PR3, consistent trace blood (I'm talking for over a year) in my urine without protein and a negative kidney ultra sound. All my other kidney function looks good. I have confirmed Eustachian tube dysfunction. Confirmed thyroid nodules, and ew..this next one grosses me out a little, brain atrophy. Oh, and the bright red sore throat that has no rhyme or reason.

My other symptoms that can't be confirmed with tests are migratory arthralgias mostly in my leg/feet joints, extreme fatigue, a face rash and comes and goes (not consistent at all), but not ever there when I see a Dr.

I'm not trying to figure me out so much anymore though. I have a direction, and going back to see Dr. K is part of that plan. He's good and I have confidence in him. Reading all the stories as I learn has me educated enough to ask questions when something new creeps up or is out of whack. For now, I look at my situation as an opportunity to treat my symptoms MY way.

[JanW]

She came to him with the diagnosis -- she was biopsied when she had the nosebleed and went to ER. He said the only time her ANCA ever went positive was after a miscarriage. This kind of case is rare to be sure -- more typical is probably someone like me for whom markers bear no relationship to symptoms (asymtomatic, P3 really high same with ANCA).

[Nancy-S]

Thanks again Jan. I'm thinking my throat issue isn't wg at all. Its good to not feel the need to set up another appt.

[JanW]

No problem, Nancy. Just to be clear -- positive biopsies of the throat for WG are rare but throat problems for weggies are very common. I would in fact assume that your throat problems are related -- I'm just telling you that they likely wont help in your diagnostic quest.

I was told by my rheumy to assume everything is related to my WG (completely healthy otherwise) because there's no downside risk while ignoring an emerging flare is pretty risky.

[Nancy-S]

Oh, gotcha... thanks for clarifying. I've looked high and low to solve this throat issue and couldn't find much. I appreciate the clarification. Ill keep a vigilant eye on it. :-)

[maria garcia]

Thanks Jan. I'm curious, without symptoms, why did he run blood? I find interest in that fact because I had such a negative conversation with a local ENT (no wgs experience). I went to her with sinus and ear problems, and she was terrible, awful. I told her I'm C-ANCA/PR3 positive and for that reason I'm vigilant with any new symptom. Her reply was something about because we don't know how many people with C-ANCA are running around without a disease she disagrees with me being vigilant and to be assured if it's gonna happen, it will happen.

All I know is that I have confirmed blood work C-ANCA/PR3, consistent trace blood (I'm talking for over a year) in my urine without protein and a negative kidney ultra sound. All my other kidney function looks good. I have confirmed Eustachian tube dysfunction. Confirmed thyroid nodules, and ew..this next one grosses me out a little, brain atrophy. Oh, and the bright red sore throat that has no rhyme or reason.

My other symptoms that can't be confirmed with tests are migratory arthralgias mostly in my leg/feet joints, extreme fatigue, a face rash and comes and goes (not consistent at all), but not ever there when I see a Dr.

I'm not trying to figure me out so much anymore though. I have a direction, and going back to see Dr. K is part of that plan. He's good and I have confidence in him. Reading all the stories as I learn has me educated enough to ask questions when something new creeps up or is out of whack. For now, I look at my situation as an opportunity to treat my symptoms MY way.

What is brain atrophy? Are your other confirmed health issues due to Wegeners? Are you on any medication for wegs?