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LisaMarie
03-09-2011, 04:13 AM
Ok have a question for all you oldies with WG limited....Can you get a positive tissue sample if the dog is sleeping?
Can you get a negative result if alot of inflammation is going on in the areas they pull from for other reasons beside WG?
IS THE TISSUE EFFECTED WITH WG ALWAYS EFFECTIVE???????
And last but not least do you have to have a positive tissue to have WG?

I know we have discussed this in the forum but i keep getting conflicting data and one of the non WG docs at Mayo realy rattled my cage so to speak.....
Thanks
Lisa Marie:unsure:

Psyborg
03-09-2011, 06:14 AM
I've never had a tissue sample taken. As I understood it the diagnosis can be made with postive ANCA and stenosis alone as WG is one of the very few illnesses that cause stenosis of the trachea.

LisaMarie
03-09-2011, 06:25 AM
What if you have negative ANAC and no tisssue samples but everything else...sinus ...joint pain...funcky swelling of mandible...raising CRP.....I thought both could be negatice and you can have WG with Tracheal stenosis...especially when they rule out reflux as a causitive agent...i had silent reflux but vocal cords clear...and am now on nexium and zantac and still have clear vocal cords...ughhh....i just get so confused when a doc says something..even if he is not the specialist:confused1:

Psyborg
03-09-2011, 06:41 AM
Honestly, I'm probably not qualified to say. I believe there are folks on the forum that have WG and have never had a single positive test. Don't doubt the diagnosis if it fits...I've been down that self doubt trail a bit myself.

As a side note I seem to remember my ENT saying that samples from the trachea are rarely affective, and that they didn't bother with me because I had the other markers. If you have the diagnosis I'm sure they based it on the overall picture.

NicShaf
03-09-2011, 07:48 AM
I think Bob is correct, most doctors will give a diagnosis based on the overall picture. I had two tissue samples taken, one from my lung and one from my nose, and both came back inconclusive...which, to my understanding, is par for the course, it is rare to get a 100% confirmation from tissue samples.
I'm unsure about you not having any ANCA levels, I thought that was a big factor in diagnosing WG, but I'm not sure that it is necessary for diagnosis...hopefully someone else can chime in with more info about that.
I don't think effected tissue will necessarily always be effected, it can heal and become healthy tissue again.

Sangye
03-09-2011, 09:30 AM
You can have a (-) biopsy and (-) ANCA and still have Wegs, especially when the biopsy is from the upper respiratory area-- famously inconclusive.

LisaMarie
03-09-2011, 10:46 AM
thanks.....o hate this self doubt crap it really send u on a roller coaster all of it s own

pberggren1
03-09-2011, 10:49 AM
I am flaring now and have neg ANCA and neg biopsy.

LisaMarie
03-09-2011, 12:03 PM
thanks Phil...it s nice to know I am not the only one

JanW
03-10-2011, 12:36 AM
Definitely not uncommon Lisa -- I was biopsied at the time of my stenosis surgery, and all came back inconclusive. I was + ANCA and high P3 at the time.

Stenosis and saddle nose are really easy diagnostic markers -- like Bob says very few diseases cause it, and WG is the main one.

Chris G
03-10-2011, 03:13 AM
LisaMarie
Another disease you might want to research is Relapsying Polychondritis. RP causes inflammation of the cartilage in your body.....nose, ears (external ear usually), trachea, joints, etc. MANY of its symptoms are similar if not the same as WG. I researched RP extensively when I flared for the first time in 2007, and could not find a doctor who knew anything about these diseases. I believe RP is usually ANCA negative. For a long time I believed that I had RP, until my nasal crusting and bleeding began last year......crusting and bleeding are not symptoms of RP.
Good luck
Chris

drz
03-10-2011, 08:04 AM
I might be one of the rare ones in that my ANCA markers were extremely high and the kidney biopsy the next day confirmed my kidneys were riddled with Wegener's activity so there was no question about my diagnosis. Usually things are more mixed and results are not as clear cut so diagnose is often best guess.

Now I have cold or maybe it is start of Wegener's flare since my prednisone is down to 9 mg on my taper down. The diagnosis of what it actually is will depend upon what develops so it is a waiting game with a hope for the best. I think flares are often more difficult to diagnose than original Wegener's cause symptoms are generally much prevalent in the initial presentation but the diversity of symptoms and rarity of disorder make it difficult to diagnose so it often takes many months or even years before we finally get an accurate diagnosis.

Sangye
03-10-2011, 10:40 AM
drz, it's not rare to have (+) ANCA and (+) biopsy. It's more unusual not to.

I also was very fortunate to present with severe lung hemorrhage, vasculitic rash, severe joint pain, severe anemia and fatigue, off the chart ESR and ANCA, and a (+) skin lesion biopsy. It all spelled W-E-G-S. :rolleyes1:

drz
03-11-2011, 07:18 AM
drz, it's not rare to have (+) ANCA and (+) biopsy. It's more unusual not to.

I also was very fortunate to present with severe lung hemorrhage, vasculitic rash, severe joint pain, severe anemia and fatigue, off the chart ESR and ANCA, and a (+) skin lesion biopsy. It all spelled W-E-G-S. :rolleyes1:

Yeah, but look what kind of shape we are in now. :biggrin1: i would gladly have had less severe symptoms and more question about my diagnosis, wouldn't you? I don't know if presenting with our severe symptoms was really fortunate, it just made our diagnosis easier and treatment more difficult and made us feel lucky to survive.

So how are you doing today. Did the truck move on? Has the rtx kicked in so you can feel the difference?

Hope you are having a good day! Virtual :hug1: for you

LisaMarie
03-11-2011, 09:14 AM
Sangye...hope u r doing well....I have been so fustrated lately....i have all the symptoms plus tracheal stenosis..unexplained fevers...nasal crusting...joint pain...rashes..mandible mass...right sinus issues worse than left with no releif from antibiotics....hearing loss right ear left ear ringing and pain that comes and goes ...left side swellingof my left leg and ARM and hand ...every rising CRP...funky burning pain on the top of my left foot that comes and goes and fatigue...motto forget tongue lesions...i think it is harder when we have what they call limited WG....then to go to Mayo and have a non WG specialist question my diagnosis...after all the drugs i have taken...good news is i finally saw Dr Specks...have to go back on May and be on 10mg pred...going to 20 this weekend...and it is where i generally start having problems..so wish me luck...plan on Dr Specks being my main WG guy and use the one hear as a go thru person...i have so many docs now it is hard to keep them all informed and straight....did u ever feel this wa:predrage:y in the beginning?

Sangye
03-11-2011, 10:58 AM
Yeah, but look what kind of shape we are in now. :biggrin1: i would gladly have had less severe symptoms and more question about my diagnosis, wouldn't you? I don't know if presenting with our severe symptoms was really fortunate, it just made our diagnosis easier and treatment more difficult and made us feel lucky to survive.

So how are you doing today. Did the truck move on? Has the rtx kicked in so you can feel the difference?

Hope you are having a good day! Virtual :hug1: for you
Thanks, drz. For me it was actually much better to have a severe onset and be at death's door. I had such difficulty accepting the medical treatment as it was. If it had been less severe or a questionable dx, I might not have started treatment at all. It took me a year to go to an MD, and I only went because I was nearly dead.

I'm pretty wiped out because of the long day at JHU yesterday. Just holding out for next week, when the rtx should kick in.

Sangye
03-11-2011, 11:06 AM
Sangye...hope u r doing well....I have been so fustrated lately....i have all the symptoms plus tracheal stenosis..unexplained fevers...nasal crusting...joint pain...rashes..mandible mass...right sinus issues worse than left with no releif from antibiotics....hearing loss right ear left ear ringing and pain that comes and goes ...left side swellingof my left leg and ARM and hand ...every rising CRP...funky burning pain on the top of my left foot that comes and goes and fatigue...motto forget tongue lesions...i think it is harder when we have what they call limited WG....then to go to Mayo and have a non WG specialist question my diagnosis...after all the drugs i have taken...good news is i finally saw Dr Specks...have to go back on May and be on 10mg pred...going to 20 this weekend...and it is where i generally start having problems..so wish me luck...plan on Dr Specks being my main WG guy and use the one hear as a go thru person...i have so many docs now it is hard to keep them all informed and straight....did u ever feel this wa:predrage:y in the beginning?
I have been like that a lot, Lisa Marie. I really understand. It may take a bit to get settled in with Mayo and your new docs there. It took me a few months at JHU. It will help when you can get all of them (even local) communicating with Specks. Meanwhile, all I can say is take one day (or hour) at a time. Don't look too far down the road or worry that it'll always be like this. It won't. Hugs to you.

LisaMarie
03-12-2011, 12:55 AM
Thanks Sangye...I try not to look too far back or too far ahead ...it just fustrates me...Have a great weekend

Sangye
03-13-2011, 02:36 AM
I've recently learned that frustration is anxiety in disguise. I can certainly relate.

elephant
03-14-2011, 12:46 PM
LisaMarie, I still get the swelling of my left lower leg on and off. It's annoying, at one point even my left forearm would swell. Your symtoms will get better once the wegs get under control.

LisaMarie
03-14-2011, 12:49 PM
Thanks elephant....i look forward to it

jtausan
03-14-2011, 01:09 PM
Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

JanW
03-15-2011, 12:45 AM
If they scope you they can easily see the stenosis, so there should be no problem there.

Sangye
03-15-2011, 01:34 AM
Glad you're going back, Jodi. Jan is right-- they should be able to see it and treat it no problem.

drz
03-15-2011, 05:38 AM
Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

I remembered when I was scoped because of trouble swallowing and feeling sore in throat area. One doctor thought it was the Wegener's attacking my throat area, but the one with more experience recognized the symptoms as inflammation and swelling cause by
GERD. They doubled my meds for GERD and the symptoms subsided. I was very relieved to find out I was not having stenois from Wegener's disease. If the problems are caused by irritation from GERD; it can be treated usually by changing the meds which seems easier than surgery to me.

JanW
03-15-2011, 07:03 AM
I was treated for GERD, before I was ever scoped. It wasn't until someone actually scoped me that they immediately recognized the problem as being scarring around the vocal chords.

LisaMarie
03-15-2011, 07:07 AM
Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on Gerd meds. This is after I had a positive anca and a negative sinus tissue sample. All my other symptoms were totally wegs tho. I looked for other medical care cuz I knew I had wegs and I found a Rheumy who put me on methatrxate and prednisone. I have now been on it a year and don't feel much better. I am leaving on Tuesday for mayo, I have appts starting wednesday. I also see Dr Specks this time and am very happy about that. My Subglottic Stenosis is so much worse and am also seeing the throat specialist. I can't live anymore with this tiny, tiny airway. I am just worried that they will tell me it's acid reflux again and won't do anything. My mom is going with me so I have another voice also. I ilk keep everyone posted on my visits and I wish you luck, Lisa Marie.

Jodi

wish you all the luck....write down anything you want to ask...I spoke with Dr Specks about Gerd...I have "silent reflux and my vocal cords are not irriatated.....so Gerd did not cause my stenosis...I have never had any inflamation to my vocal cords...I took my sister in law with me...she was great and kept me grounded...We stayed at the travel Inn for 57.00 a night it has free breakfast and coffee and juice all day...plus a micro wave and fridge in the room ...parking is free.....and they hold reservations til 4pm...keep me posted and good luck...I go back May 19th