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Thread: for those whose onset was sinus-related

  1. #11
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    Hey Michelle,

    I had a few sinus infections over my lifetime. 5 years ago, I got the HiN1, and either another flu or very bad sinus infection that year. I also started teaching young children that year in an older school.

    The last year and a half I had almost constant phlegm in my throat, hoarseness, and fatigue, finally ending with a "raging" sinus infection that showed some "wacky" bacteria (per my ENT) in the nasalscopy he did. I ran to urgent care when I got sick again, and had a chest x-ray and they said I had pneumonia. On antibiotics again. follow up showed pneumonia clear, but I had one nodule.

    In the midst of all this, I saw an immunologist who ran blood work and found above normal pANCA level and referred me to a lung doc for a biopsy to see if it was Wegs.

    Ironically, I have been feeling better than I've felt in years over the last 2 months, but now my b/f and my grandson are sick. Crossing my fingers that I don't get sick again. I am seeing a rheumy this week.

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    Quote Originally Posted by mishb View Post
    Is it possible that WG has been smoldering since a child - who knows, but I personally don't think so.

    I believe, that if antibiotics are helping you, then you are probably lucky enough NOT to have Wegeners
    I read that life expectancy after diagnosis of Wegs is 2 years without treatment. If that is true, it doesn't seem possible Wegs could be dormant for years, is it? I wondered if my prior issues were Wegs-related, but that was 10 years ago (vertigo for a year), and Lyme's disease.

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    Hi Lovetoswim

    I think when Wegs attacks the vital organs like the lungs and kidneys then you are looking at that scenario. Wegs, I am sure, can be present for many years without treatment. I have read many stories of people wondering if their sinus issues, joint issues, muscular issues, bowel issues etc that they had been suffering from were Wegs related and only when the Wegs became very active and attacked other organs did they get a diagnosis of Wegs and finally, with treatment, improvement in the symptoms they had had for many years. So I would not be surprised if your prior issues were indeed related to Wegs.

    Rose
    Last edited by Rose; 04-17-2017 at 06:30 AM.

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    I had multiple ear infections and antibiotics (adult onset) and shortly before my hospital and dx, fluid on the ears. I have resulting mild/moderate hearing loss and irritating tinnitus. I am hoping that once I get to full "remission" that my hearing and tinnitus will improve, but I'm not holding my breath.

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    Quote Originally Posted by lovetoswim View Post
    I read that life expectancy after diagnosis of Wegs is 2 years without treatment. If that is true, it doesn't seem possible Wegs could be dormant for years, is it? I wondered if my prior issues were Wegs-related, but that was 10 years ago (vertigo for a year), and Lyme's disease.
    Wegs is often NOT diagnosed until it gets very serious and life threatening even though in hindsight many people can recall symptoms over the past several years. But these symptoms are often misdiagnosed and thus not treated correctly. Such cases may have simmered or smolder for awhile before it flared enough to get diagnosed and treated appropriately. Then those symptoms usually disappear. My joint pains, foot pain, nasal crusting and bloody noses all improved or disappeared after my diagnosis and correct treatment. If I had not received appropriate treatment after my diagnosis I would have died in a few weeks. Even with some very aggressive treatment my survival was very iffy for several weeks.

    My Weg expert at Mayo said my history of frequent sinus and ear infections may have predisposed me to getting Wegs many years later.

    My hearing loss was permanent but after getting a BAHA my speech returned to near normal and the tinnitus mostly disappeared.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by SophiasMom View Post
    I had multiple ear infections and antibiotics (adult onset) and shortly before my hospital and dx, fluid on the ears. I have resulting mild/moderate hearing loss and irritating tinnitus. I am hoping that once I get to full "remission" that my hearing and tinnitus will improve, but I'm not holding my breath.
    I've had tinnitus most of my adult life. I also get ear fullness, but thankfully, no ear aches to speak of. This past week, the pollen count is off the charts, and my ears have been screeching nonstop with tinnitus. Uggh

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    Hi drz, what is a BAHA?

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    drz, that's worrisome, especially since I saw my ENT yesterday and brought my blood work in, he scoped my sinuses and declared them to be near perfect condition and totally believed I did not have Wegs. He has treated patients with Wegs and believes I suffer from chronic sinus issues (due to deviated septum, which had been corrected, but failed) and one small nasal polyp.

    I don't know what to believe. He felt my blood work didn't prove I had Wegs, yet he didn't really know a lot about ANCA readings.

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    Also, atmospheric pressure changes can affect the ears in negative ways. With pollens and constantly changing weather, spring can be miserable. I've always had seasonal allergies, but I feel like Wegs damage to my ears and eustachian tubes has made me more sensitive to the pressure changes. Although I know a few non-Weggies who are sensitive to it as well. My tinnitus comes and goes and I'm not sure how related to seasons. Right now it isn't bad at all. My first tinnitus ever was a few years before Wegs came on. It was very weird and low pitched, and sporadic, and I thought it was coming from outside somewhere. When I realized it was from my own head, I started having minor dizziness, too. Then it all went away for a few years. But I wonder if it was a precursor to Wegs. What a weird disease.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Irene, you may not have Wegs... I never got a glowing report from my ENT like that, even before Wegs was discovered in me. The ANCA thing is a mystery to me, too. The rheumy should have some answers there. I can't wait!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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