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?

[Nancy-S]

I'm seeing a neurologist on Friday. I don't have a wegs dx right now. Just floating through thr process. That's why when things like an unexplained inflammed throat for 3 weeks makes me suspicious. Atrophy is shrinking of brain, I think a loss of cells. Makes me want to drink lots of water. Maybe it can sponge up some water and get bigger. Lol

[drz]

I'm seeing a neurologist on Friday. I don't have a wegs dx right now. Just floating through thr process. That's why when things like an unexplained inflammed throat for 3 weeks makes me suspicious. Atrophy is shrinking of brain, I think a loss of cells. Makes me want to drink lots of water. Maybe it can sponge up some water and get bigger. Lol

Most people have some shrinkage of the brain as natural part of aging. It doesn't necessary mean there are any problems with brain functioning. Too much water can cause real problems in the brain but requires a great deal of water to do so as most people don't drink enough water.

[Nancy-S]

I forgot to mention the atrophy was stated as advanced. My appt with neurology is in the morning. The doctor prefers film over CD's and/or reports. it makes me think she'll be thorough.

Something about the description makes me think of shrunken apple-head woman. I feel so shrivled. Its completely mental, but hey...whatever it takes to get me to drink water. Wish me luck. I hope she's decent.

[Al]

I forgot to mention the atrophy was stated as advanced. My appt with neurology is in the morning. The doctor prefers film over CD's and/or reports. it makes me think she'll be thorough.

Something about the description makes me think of shrunken apple-head woman. I feel so shrivled. Its completely mental, but hey...whatever it takes to get me to drink water. Wish me luck. I hope she's decent.

Nancy--Maybe offer to play scrabble with the neurologist. Just kidding--she would charge you by the hour. My point is, the proof is in the pudding, so to speak. I would want to know more about cognitive functioning (sounds like you have plenty) than about cubic volume.

Al

[pberggren1]

I hope it is chocolate pudding.

[Nancy-S]

If there was pudding it would no doubt be chocolate. But all they see is air. Next...MRI. I get more radiation than my son who's an engineer at a nuclear power plant.

[Al]

If there was pudding it would no doubt be chocolate. But all they see is air. Next...MRI. I get more radiation than my son who's an engineer at a nuclear power plant.
At least the MRI isn't radiation, though it is likewise annoying. Let us know what hot air they come up with next, Nancy.

Al

[Sangye]

Good luck, Nancy.

Al, why are you referring to the doctor's concerns as "hot air?"

[drz]

If there was pudding it would no doubt be chocolate. But all they see is air. Next...MRI. I get more radiation than my son who's an engineer at a nuclear power plant.

How did MRI go? They have certainly improve this procedure to make it far more user friendly. I never had any trouble doing them but had some claustrophobic friends that could not get through this procedure even with a heavy dosage of a relaxant drug. I remember my first one many years ago was like being stuck in a small culvert while several men pounded on the outside with baseball bats and crowbars for an half hour. The last one I had was much more pleasant and done quicker too.

[Sangye]

I had several in the older style, ultra small tubes. I don't do well with sedatives so I just meditated. It was tough.

JHU has a newer style--much larger inside, and the room is kept brightly lit. It's not an Open MRI, which I have also had. Those produce lousy images, but they're wide open.

[Nancy-S]

Drz, I'm waiting on approval from my insurance for the MRI. It'll give me time to decide if I want to try xanax or something. I know a gal that walks into the room with her eyes closed and doesn't ever open them until the procedure is over.

I'm pretty sure "hot air" is the empty space they say is in my head. Glad to know there's no radiation.

[Sangye]

I close my eyes before they roll me into the tube. Also, unless you're very small, cross your arms because feeling the narrowness of the tube on your arms can stimulate anxiety. A great visualization I use: I picture myself laying in a canoe on a lake. That way even if I feel the tube with my arms at my side I can convince myself that the top is wide open blue sky.

For a brain MRI they lock your head into a large contraption. The first time I had one they said "This might make you anxious." I didn't see how, until they closed it over my head. Holy cow. Meditate. Visualize. Or take the drugs if it's too much.

[pberggren1]

I thought I was afraid of small spaces but I had no problem with the MRI. Only complaint was the intense noise.

[Al]

...I'm pretty sure "hot air" is the empty space they say is in my head. Glad to know there's no radiation.

Hot air is what keeps the balloon aloft.

Al

[Dirty Don]

Hot air is what keeps the balloon aloft.Al

Then we should measure our 'loftiness' by how much hot air we produce? lmao! Then I should be far above the clouds! If only the WG would quit cutting off my 'air supply'...exhales hot air...again...sigh...

[Al]

Then we should measure our 'loftiness' by how much hot air we produce? lmao! Then I should be far above the clouds! If only the WG would quit cutting off my 'air supply'...exhales hot air...again...sigh...
(What, you don't get high on WG? There are clouds in Arizona...?)

Al

[Dirty Don]

(What, you don't get high on WG? There are clouds in Arizona...?)Al

Looking outside...not many clouds here, and what few there are are all white and fluffy...but too high for me to reach right now!

[Nancy-S]

It did sprinkle yesterday. The kids were thrilled with the strange stuff falling out of the sky. They played outside in it for over an hour.

[Nancy-S]

:predrage:
I close my eyes before they roll me into the tube. Also, unless you're very small, cross your arms because feeling the narrowness of the tube on your arms can stimulate anxiety. A great visualization I use: I picture myself laying in a canoe on a lake. That way even if I feel the tube with my arms at my side I can convince myself that the top is wide open blue sky.


I took your advice, Sangye. I visualized the canoe scene....and was quickly overcome with fear. I dislike water very much...a small detail I forgot about....haha. can you believe I did that? I can't even blame pred. Lol... It was an easy fix, I just changed scenery. I settled on an exhausted mom sneaking a nap while the kids are in school. It worked.

[Al]

:predrage:

I took your advice, Sangye. I visualized the canoe scene....and was quickly overcome with fear. I dislike water very much...a small detail I forgot about....haha. can you believe I did that? I can't even blame pred. Lol... It was an easy fix, I just changed scenery. I settled on an exhausted mom sneaking a nap while the kids are in school. It worked.
Well done, Nancy! And perfectly creative. By the way, any results worth passing on...?

Al

[Sangye]

:predrage:

I took your advice, Sangye. I visualized the canoe scene....and was quickly overcome with fear. I dislike water very much...a small detail I forgot about....haha. can you believe I did that? I can't even blame pred. Lol... It was an easy fix, I just changed scenery. I settled on an exhausted mom sneaking a nap while the kids are in school. It worked.
LOL Wonderful! SO glad it's over. :thumbsup: