still undiagnosed and annoyed

[marlo511]

I've been to two vasculitis centers -- Mayo and Cleveland -- and basically told it seems unlikely because I'm not sick enough at the moment. I've done the reading and I understand why it's difficult to diagnose, but that doesn't make one worry any less about it suddenly coming on with a vengeance. I articulated that fear and was surprised to have it summarily dismissed at Mayo with a "Well, you can't live in fear." And that was from a Wegener's expert. Don't even get me started on the two days I wasted there for a rheumatology appointment. I had great expectations for the vasculitis centers, but I guess they can only do so much.

Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.

Both places have said the pieces don't fit exactly and my currently mild symptoms seem to suggest it may not be. And then say that, of course, they can't rule it and "let's see what happens." Very frustrating to have to wait for bad stuff to happen to figure out what may (or may not be) going on ....

This is my first post. I've been reading -- and learning a great deal here! -- for weeks. Thanks to all of you for sharing your experiences. (My issue started in Nov. with 3 weeks of hard, non-productive coughing, lung inflammation/crackling, followed by pleurisy, two sinus infections and ear pain and ringing. Lost 30 pounds. Antiobiotics did little, only steroids made things better. The ANCA panel my doc ordered showed slightly elevated PR3 with atypical ANCA 1:320 and started the journey down this path. Mayo ANCA panel showed negative PR3 and positive pANCA. Now just have lingering sinus congestion, full ears and had a Raynaud's-like episode (a first for me) a few days after tapering down on my third round of steroids. Blood work showed borderline ANA and Sjogren's so I don't know if this is a question of Wegener's or figuring out another AI disease in play ... or clinging to hope that it was just a nasty virus/string of bad luck this winter tied to have a very germy pre-schooler in the house!)

[Geoff]

For me, getting a diagnosis was such a struggle, that when I was finally diagnosed in November, I was SO happy! Happy to have WG. Really.....isn't that sad and ridiculous???

Chris I know exactly what where you are coming from. Check out my 'story'...'Glad to be diagnosed' I was so Happy??!!

[drz]

I've been to two vasculitis centers -- Mayo and Cleveland -- and basically told it seems unlikely because I'm not sick enough at the moment. I've done the reading and I understand why it's difficult to diagnose, but that doesn't make one worry any less about it suddenly coming on with a vengeance. I articulated that fear and was surprised to have it summarily dismissed at Mayo with a "Well, you can't live in fear." And that was from a Wegener's expert. Don't even get me started on the two days I wasted there for a rheumatology appointment. I had great expectations for the vasculitis centers, but I guess they can only do so much.

Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.

Both places have said the pieces don't fit exactly and my currently mild symptoms seem to suggest it may not be. And then say that, of course, they can't rule it and "let's see what happens." Very frustrating to have to wait for bad stuff to happen to figure out what may (or may not be) going on ....

This is my first post. I've been reading -- and learning a great deal here! -- for weeks. Thanks to all of you for sharing your experiences. (My issue started in Nov. with 3 weeks of hard, non-productive coughing, lung inflammation/crackling, followed by pleurisy, two sinus infections and ear pain and ringing. Lost 30 pounds. Antiobiotics did little, only steroids made things better. The ANCA panel my doc ordered showed slightly elevated PR3 with atypical ANCA 1:320 and started the journey down this path. Mayo ANCA panel showed negative PR3 and positive pANCA. Now just have lingering sinus congestion, full ears and had a Raynaud's-like episode (a first for me) a few days after tapering down on my third round of steroids. Blood work showed borderline ANA and Sjogren's so I don't know if this is a question of Wegener's or figuring out another AI disease in play ... or clinging to hope that it was just a nasty virus/string of bad luck this winter tied to have a very germy pre-schooler in the house!)

WOW! What a tough situation!
At least no one here will tell you to go a vasculitis specialist for answers.
The question now is how to cope with this uncertainty.

[Chris G]

Oh my gosh Marlo.....what a disappointing situation that must have been for you. Keep a close vigil on your symptoms & keep thorough notes. I'm a big believer that we have to advocate strongly for ourselves. When it feels like no one believes you, try not to let it get you down. I think it's happened to most of us (small consolation, I know). Keep your chin up!

[JanW]

I went undiagnosed for years (since 2005, dx in 2010) and never got 'really' sick -- just ended up with mobility problems and ankle swelling which led to the blood tests and positive c-ANCA results, but had bad stenosis (narrowing of windpipe) for several of those years. I was put into remission with a low dose of mtx and no steroids pretty quickly (within a few months), and had surgery on the windpipe (another story). One of the worst things that happened to me was the bridge of my nose collapsed, but it was also one of the best things since it is so strongly correlated with WG. All of this is only to say that while you should continue to seek dx, you may not be like a 'ticking time bomb' meaning that you won't necessarily get very sick, have organ failure, or do permanent damage to yourself if it takes you a while to get treatment. Just throwing that out there. I'm fine now except for lingering problems with my foot, but that's really a pretty minor thing. I got healthy in treatment very quickly.

[delorisdoe]

[Having been to these two centers, I will share my opinion that I thought the Cleveland Clinic was much more thorough in the exam and in reviewing reports and just spending time with me. I was impressed. I had 20 minutes at Mayo in an appointment that started with "Nice to see you again" when it was my first time there. It might sound petty, but when I'm driving hundreds of miles, taking time from work and spending a great deal of money, I do expect the doc to take 5 minutes and read the referral from his colleague.


when i was diagnosed I had a "team" of doctors that was to be treating me. when I met one of these doctors not only was she 1 hour late for the day but she closed the door, sat down with her resident and started to tell me about lupus and the treatment for my lupus? Her resident kept trying to interupt but she would not allow him to. Finally i interupted and said "I have lupus too"???? she asked the resident what it was i had. lol. when i told my diagnosis doctor about it he removed her from the group and said "we wont bother with her anymore". She was primarily a lupus doctor. i was suprised that she did not clue in as i was her only wg patient of the day.

[marlo511]

Finally i interupted and said "I have lupus too"????

Too funny! Have to keep them on their toes!

[Sangye]

Hi marlo, I'm glad you joined our group. I agree with JanW that there is no need to feel like a ticking time bomb.

I have to trust the conclusions of 2 excellent vasculitis centers. I know that is probably not what you want to hear though, and I understand your frustration. I wonder if you've contacted them again to let them know how your symptoms worsen with tapering pred. You might have looked clinically stable when you saw them.

Also, something you may not know is that Mayo's lab work is considered far more accurate than local labs. They do their own assaying and are quite famous for the quality of work. So I would trust their (-) PR3 over the local lab results. When I went to Mayo Arizona, my rheumy insisted on me doing my ANCA blood draws on-site every 3 months. It was a 3-hr (one way) drive across the desert and I was in seriously bad shape.

Though I am technically-sorta-kinda in remission, I still have numerous symptoms. The key with Wegs is what types of symptoms, how bad they are, and if they're worsening. I remember feeling very put-off once when I told Dr Seo (JHU) about some troubling symptom and he said "I can live with that." I was like "But you're not living with it, I am!" It took me awhile to hear his explanation-- that oftentimes with Wegs you have to accept living with a number of low-level symptoms that do not reflect active disease. Periodically I check my BVAS score on my own when I get worried about this symptom or that. I can't even tell you how many times, and for how many symptoms Dr Seo and my other Wegs docs at JHU have said we just need to "wait and see." You can't jump on every symptom or hit it with meds. I was justifiably overly anxious about every symptom for a long time. Now I've seen how many symptoms just ebb and flow on their own, many completely disappearing as mysteriously as they came.

[elephant]

Hi Marlo, who did you see at Cleveland Clinic? Did they have you pee in a cup to check your kidneys? Did they do a CT of your lungs. I had the same exact symtoms when I started out with WG ( I actually had WG all my life and didn't know it long story) in 2007. I also had severe joint pain along with the sinus/ear/eye symtoms. Just keep a journal of your symtoms and let the docs know what is going on.
I agree with Sangye.

[Jack]

Good post Sangye.
I sympathise with the docs who are faced with inconclusive symptoms and test results. Do you wait for something more specific (serious?) to develop or begin treatment with a regimen of dangerous drugs that could kill the patient? I think I would be one of those who said wait and see.