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Thread: Has anyone ever heard?

  1. #11
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    Quote Originally Posted by Tom View Post
    Exactly how mine was started or discovered but I can trace it back to my cancer surgery somewhat!
    Perhaps your cancer surgery triggered it, if you were already pre-disposed or already had it smoldering but didn't know it. And I didn't mention my giant antibiotic resistant ear infection, in both ears, that stands out as the beginning of what probably could have been dx'ed as Wegs if anyone had thought of it. A big ear infection at the beginning has been reported fairly commonly on here and I wonder if you had one, too, Tom.
    Anne, dx'ed April 2011

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    Quote Originally Posted by scottgirl21 View Post
    Has anyone ever heard or known someone who just has localized wegs in ENT area and it doesn't initiate anywhere else? Or has anyone heard of being in remission or comfortable state without immunosuppresant drugs? I guess what I am asking are there weggies out there who do not have kidney or lung involvement ever and just upper respiratory that is manageable?
    I believe mine was localized to my sinuses for years, but unfortunately I had a group of uninformed and closed minded docs who didn't believe it was wegeners. So, now I have lung involvement.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Quote Originally Posted by annekat View Post
    Perhaps your cancer surgery triggered it, if you were already pre-disposed or already had it smoldering but didn't know it. And I didn't mention my giant antibiotic resistant ear infection, in both ears, that stands out as the beginning of what probably could have been dx'ed as Wegs if anyone had thought of it. A big ear infection at the beginning has been reported fairly commonly on here and I wonder if you had one, too, Tom.
    The Oncologist thinks there may be a connection. He says that because when they opened me to do the colon surgery, they found that the cancer had went thru the colon wall and adhered to my bladder! They had to call in a Urologist for the bladder but they couldn't take the bladder because I did not sign off on it and the wife had no power of Atty to authorize it.
    So they took as much around the margins as possible to try and save the bladder.
    After they found the bladder, he said they turned every organ in my body over and looked at it for more cancers while they were in there!
    My diabeties flared up just after that, I started having the sinus problems, I felt the same fatigue leading up to my cancer dx!
    I had to have a full flare up before they had an AH HA! moment.
    My oncologist says he suspected Vasculitis earlier but because there was no real evidence to support it at the time that my insurance would not pay for the testing because it is a test that is prone to false positives while trying to dx it! So I had to have the flare up and the purpura and then he said it all came together like a puzzle!
    After all was said and done, I found that I was not upset with the Drs for not finding it after about five years of complaints and being told that I had a radical surgery and it was expected that I would have problems but they chose to take them as they came!
    Like you also, If they had found it earlier, I would have my lungs and maybe just localized to my sinus and ears!
    I do 2 liters of 02, 24/7 !
    I'm up beat about the whole thing but sometimes my lack of 02 brings me down but I get right back up after having my own little pity party as one thread is titled! Or sometimes my wife joins me but I try to keep to myself! She has been my rock though thru all of this!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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    I'm not an expert but from what I've read, so called 'limited' only tends to effect upper respiratory which includes the lungs.
    I have not been on any meds for 3 years and I have no kidney involvement. Every day I still suffer with ongoing nasal discomfort, sore eyes, the cough, the loss of hearing and more. At this moment I'm waiting to hear the results of the CT scan I just had on my lungs. My cough is much worse.
    I was dx in 2010. I read and have been told this disease is progressive and even in so called remission the disease is still
    advancing insidiously through its course.
    From what I'm seeing, it appears to be different in everyone. In some, the disease progresses more rapidly than others. You can't predict this disease but if you have it, the disease continues to travel its course.
    Granulomar is the culprit which appears to continue its assault in our bodies.
    Am i nearly right??

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    Quote Originally Posted by PJ2010 View Post
    I'm not an expert but from what I've read, so called 'limited' only tends to effect upper respiratory which includes the lungs.
    I have not been on any meds for 3 years and I have no kidney involvement. Every day I still suffer with ongoing nasal discomfort, sore eyes, the cough, the loss of hearing and more. At this moment I'm waiting to hear the results of the CT scan I just had on my lungs. My cough is much worse.
    I was dx in 2010. I read and have been told this disease is progressive and even in so called remission the disease is still
    advancing insidiously through its course.
    From what I'm seeing, it appears to be different in everyone. In some, the disease progresses more rapidly than others. You can't predict this disease but if you have it, the disease continues to travel its course.
    Granulomar is the culprit which appears to continue its assault in our bodies.
    Am i nearly right??
    I would argue that upper respiratory refers to the nose and sinuses and often involves the ears, and the lungs are considered lower respiratory. Most often "limited" refers to upper respiratory only, and when lungs are involved, it is considered more severe. If kidneys are involved it becomes more severe than that. However, this can be subjective and some docs or articles may describe "limited" differently, such as not involving the kidneys, or only involving one or the other of the two respiratory branches.

    I am not sure of the part about the disease advancing insidiously even if one is in remission, especially a drug free one. I do know that even if all symptoms have disappeared and there is no sign of disease activity, there is always considered to be possibility, or even a likelihood, that a relapse will occur at some point. So yes, the predisposition for the disease to take hold again is always there, or we could say it is lurking in our bodies just waiting for a trigger to start it up again. This is only how I understand it, and would love to hear what others have to say. And you are very right about it being different for everyone. Your case sounds a lot like mine, with only the respiratory system, upper and lower, involved, with hearing loss thrown in.
    Anne, dx'ed April 2011

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    It's so confusing isn't it? I struggle daily with this disease and even more with trying to understand it.

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    Quote Originally Posted by PJ2010 View Post
    It's so confusing isn't it? I struggle daily with this disease and even more with trying to understand it.
    It sure is. We all struggle to understand it, I think, and to live with it on a daily basis. Thank goodness for this forum to help us get through it and to know we are not alone. Maybe in some of our lifetimes they will find a way to keep our immune systems from doing anything but what they are supposed to be doing!
    Anne, dx'ed April 2011

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    I think generally "limited" means that it has not affected vital organs, such as lungs and kidneys. However, "limited" does not really describe severity, so the term may be misleading. GPA in the ears and upper respiratory areas may be very severe, and it may be present but relatively mild in other areas. From what I can tell in the literature, it's not certain that the disease is progressive in every patient, or that limited GPA will inevitably spread to other organs. You are definitely correct when you say that it is unpredictable! My doctor used the word "treacherous" in describing how it may retreat and reappear. I hope you get good and conclusive news from your chest CT and your cough comes under control.

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    Those are good points, Tom. My upper respiratory system and ears have sustained more damage than my lungs, and it has taken a lot longer to get the symptoms there under any kind of control. Not that my lungs are out of the woods, but the damage there affects my daily life less than what's gone on in the upper tract. So I guess I'd say the presence of Wegs there was more severe, but I do say it with some hesitation, since the lungs are a major organ.
    Anne, dx'ed April 2011

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    cjhnsn29,
    The growth they found on my lung before Dx of Wegs caused the removal of 2 lobes of my right lung.
    They told me also that it was a (hamartoma, non cancerous)! They told me it was like a mole inside my lung that got inflamed! That was January, by April, I flared and they then wondered at that point if it was a granuloma! Ya think?
    It was after the fact, but I wish they would have done more testing on it in pathology. My cardiac Dr said that would have been a must to rule out VASCUALITIS had he been on my care team at the time!
    What I do know is that this disease is hard to dx, and just as difficult to get into remission! I replied to an earlier post that the insurance would not cover the testing for Wegeners because even if I tested positive for Wegeners, I could still be vasculitis free and I would have to be in a flare to justify to the insurance to test which is what happened in my case!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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