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Thread: The weird and wacky road to a WG diagnosis...Question.

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    Default The weird and wacky road to a WG diagnosis...Question.

    OK. I had my bronchoscopy and coughed so hard my face is now covered with burst veins. I look like I have measles. Anyway - results will be in soon, but all signs so far are pointing to this NOT being WG. Probably bronchiectasis. It answers a lot of questions...particularly why traditional asthma meds do me little good.

    One of the reasons that I questioned my WG diagnosis was because this had been going on for 20 months, and I am not dead yet. I don't even feel nearly dead. And yet....every article I read tells me that untreated WG has a life span average of 5 months - increasing to 12 months if prednisone is used. OK. If I don't have WG...that still makes some sense. But...what if it WAS wagerers? I have read SO many posts about people who have gone undiagnosed for over a year. How is that possible???

    The great doc I am going to is doctor #10. With a few exceptions, they have all been wonderful...but no one had a definitive diagnosis. Most were totally NOT OK with that and referred me on. But really - I worry so much about folks who don't have persistent doctors and/or who do not do a lot of investigating themselves. I just don't understand how it can go undiagnosed so long. I suspect there must be many who have died with no one really knowing why.

    Anyway thank God this forum exists. You offer support and easy to understand explanations of complex issues. Kudos to all of you. I will let you know when I know for absolutely sure.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    If I remember correctly, Wegs had about an 80% fatality rate before they figured out the cytoxin pred regimen. So about 20% didn't & no one knew why.
    I'm not sure of my figures but it wasn't 100% fatal.

    Regardless, I hope you have a good report & are on your way to being well!

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    interesting....
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    [QUOTE=JeanMarie;68158]If I remember correctly, Wegs had about an 80% fatality rate before they figured out the cytoxin pred regimen. So about 20% didn't & no one knew why.
    I'm not sure of my figures but it wasn't 100% fatal.QUOTE]

    Up to the 70s, a WG victim, undiagnosed, was a walking dead person. Then the drug regimens were developed, things have become much better, obviously. Yet, an acquaintance has both Churgs-Strauss and WG...he's nearly my age. Got it when he was 11, for some like him at the time, docs tried other things, for him and a few others, docs tried steroids. He's still walking and talking, the 'others' aren't,...and glad to be here. As Phil has noted, many WG patients make it into their 80s now, good enough for moi! Many on here, and by note of my docs, have had WG at least up to 2 years before dx...including myself...and perhaps even earlier - medical histories need to be discussed, not guessed at. Anyways, we're much better off nowadays depending on severity, complications, and attitudes. Best to you booknut!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    You should have been put under for the bronch.
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    You should have been put under for the bronch.
    I WAS put under. The same stuff that they usually give for a colonoscopy. For the "rear admiral" as my hubby refers to it, I am out like a light. I suspect that they went light on the anesthetic for the bronch because of my breathing issues. I talked to the nurse about it afterwards. She said that the coughing happened when they were nearly done, and I was probably coming out of it. She said if they had to do another one they probably would use a little more.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Oh, Okay, I see Jacquie. The read admiral, that is hilarious. The surgeon here that does those calls them back passage camera inspections.....lol. And with a cute British Accent. He is so funny.
    Phil Berggren, dx 2003

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    Jacquie, I'm pretty sure I had undiagnosed Wegs for at least 2.5 years. And that's true of others on here, as Don said. Maybe when they say untreated Weggies will die after 5 months, they mean those in a real flare state. There can be "smoldering" Wegs, apparently, that can go on for years, with symptoms that come and go, or worsen and improve, on and on. For many, these symptoms seem to the docs just like the recurrent sinus infections, asthma, arthritic joint pain, etc., that many people have, and Weggies may get treated for these with limited success. My "sinus infections" usually subsided with antibiotics and pred, which meant I guess there was a bacterial element, but some of them came back right away or, as time went by, tended to never quite clear up. That's the point at which my ENT should have thought of Wegs, if not before. And when I finally had a very serious big flare, it was in my lungs, and it was bad enough that I do believe I wouldn't have lasted 5 months without dx and treatment.

    I'm glad the signs continue to point to you not having Wegs!
    Anne, dx'ed April 2011

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    Of course the five month thing was prior to treating with prednisone and the twelve month thing was prior to cytoxan. So, I guess now undiagnosed wg gets treated with prednisone, buying time for doctors until they FINALLY figure out what it is. It certainly is a worry that things can go on for such an incredibly long time before anyone seems to think of Wegs. But...having been diagnosed with multiple respiratory problems, I can see how confusing it all is. My symptoms are the same as dozens of other syndromes and diseases. Meanwhile, damage is done. I will be glad if it is NOT WG. But bronchiectasis is no walk in the park either. I just hope I can prevent furthur damage. I guess it just points out how essential it is to keep asking questions and pushing for answers!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    I can't say I was really being treated with pred that whole time. It was just typically a 10-14 day taper when I happened to have what was considered to be a sinus infection. Then there were times the doc just gave me an antibiotic with no pred, because he thought I'd had enough pred within a few months time, and docs don't really like to see people on pred any more than necessary. So it wasn't the same as a long term pred treatment during the time they hadn't dx'ed me with Wegs. At that point they didn't know there was anything they needed to dx me with. In retrospect, after reading on here, they really SHOULD have suspected Wegs with my antibiotic-resistant ear infection at the beginning of it all. By now, I hope they know that, as I've read of several on here who had the same thing at the beginning of their problems. But not everyone, of course.

    Bronchiectasis is a scary word, and probably a scary disease, and I'm sorry you may have it. I do hope that, like you say, you will keep in touch even after a non-WG dx is definitive! We will want to know how you are doing.
    Anne, dx'ed April 2011

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