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Thread: Our private "hypotheses" about our wg-etiology

  1. #21
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    I think back to what my Drs. said the day they gave me the diagnosis. It was a random luck of genetics. I had a better chance of winning the lottery than being Dx'd with Wegs.
    I can't honestly say what may have triggered the disease. Up until I got sick I had enjoyed good health and was physically in the best shape of my life. Then WHAM! I'm sick.
    At the time leading up to my illness I wasn't overly stressed. My Father in-law had recently passed away, but I didn't feel emotionally stressed. Then I got sick. Flared in Oct 2012. My mom passed February 24, 2013 and one month later we lost my Mother in-law.
    I've learned not to ask..."what else can happen?" I also don't spend a lot of time trying to figure out what caused the disease. It just seems counter productive to dwell on maybes and what ifs. Sometimes it's just as the doctors have said..a random luck of the draw, genetically speaking. Of course I wouldn't use the word luck. Maybe random misfortune.
    No other AI's in the family. No exposures to harmful elements, that I'm aware of. Born, raised and married military, so we travelled a lot as I was growing up, but have lived in one place now for the past 27 yrs.
    The only illnesses I had growing up we're ear infections and strep. Prior to Dx's the last ear infection was age 30. And when I was told ear infection at age 50......I knew darn well it wasn't.

  2. #22
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    Quote Originally Posted by Jaypfei View Post
    The only illnesses I had growing up we're ear infections and strep. Prior to Dx's the last ear infection was age 30. And when I was told ear infection at age 50......I knew darn well it wasn't.
    Nice pic, jaypfei. The ear infection seems to be a common denominator for many of us. Maybe the fact that you had them was an early sign, or maybe not; we know many babies and children get them and don't get Wegs. I don't know that I had ever had one before the big one at age 58 that ended up being the first big event of my Wegs. I wonder if your ear infection at 30 might have been a precursor or indicator of smoldering Wegs. Doctors out there could become more accustomed to seeing a sudden, uncharacteristic ear infection, especially in middle age, as a red flag for possible Wegs, and diagnoses could be made earlier.

    But here is so much conjecture to all of this, you are right, dwelling on it loses its point after awhile, as we will probably never know the answers. Thanks for sharing.
    Anne, dx'ed April 2011

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    I also had strep infections in my throat many years, repeatedly....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #24
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    and also mold in the house.... the mold is common in this thread....
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #25
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    I think mold is one of the most insidious things, since we often can't see it and have no idea where it might be lurking.

    I don't think I ever had a strep infection. But I did have lots of bronchitis as a kid, got painful penicillin shots, and would be coughing in class at school for weeks.
    Anne, dx'ed April 2011

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    No family hx of AI. Dysfunctional family, but not overly stressed. Earaches/severe headaches started 2 years before dx. No exposure that I know of. Was told just "bad luck." I knew there was more to the ear issues, but NEVER thought of (or heard of) Wegeners.

  7. #27
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    Genetics: Strong genetic pre-disposition. Maternal grandmother has Grave's Disease, maternal grandfather has psoriasis, maternal uncle has Type 1 Diabetes, my mother has psoriasis, my brother also has psoriasis and another brother (as well as myself) both have Raynaud's phenomenon, which might be autoimmune related.

    Environment: I grew up very near to a chemical waste dump. And by very near, I mean 0.2 miles away (I just googled it). From what I remember, a bunch of barrels of hazardous chemicals were buried there, rusted out, and it majorly contaminated the surrounding soil and the groundwater. We ate a lot of veggies and fruits from that contaminated soil. WHY oh why would you garden there? I really don't know. I hate to bring it up with my parents, but I've wondered if this had anything to do with me developing WG. It's called the Chatham waste disposal site in Escondido, CA if anyone is interested in it. I think what finally triggered my first flare was being exposed to latex and finding out that I have an allergy to it. I don't know, I think it stimulated an immune response and kicked my system into "hyper-drive", because after that the symptoms that I had already been having for a couple of years started occurring more frequently.

    Stress: I was working and going to college. I'd broken up with my boyfriend and still had to see him every day since we were dumb enough to take nearly all our classes together. This was in December, so right at the end of the semester. I started flaring during finals week. I think stress played a BIG part.

    So there ya go! A complete trifecta of genetics, environment and stress. :P

  8. #28
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    Had toncillitis twice last spring, then found out I had a brain tumor and later heard they wanted to operate it quickly. Guess that ticks both the health and stress check-boxes Oh yeah, I also started at a new job last spring so there is that too.. And was real worried about my 7 year old son in the summer as he was developing an eating disorder and started to lose weight while I was myself in pretty bad shape due to the operation and couldn't leave the house much.

    The surgery wound was infected with Staph. Aureus, and I had some infection in my nose which might have been the same. There are some articles which say a Staph infection in the nose could trigger Wegs. So I taken like 5 times antibiotics by then (two for the tonsillitis and three for my nose before I got to the hospital where the antibiotics in the IV finally took care of the infections)

    Anyway, doesn't really matter that much. I mean had someone sad there is one-in-a-million chance to get some weird disease after going to surgery then it wouldn't really had changed my mind. I guess if I got some better instructions for taking care of the wound it might not had become infected, but dunno. That's just speculation.

    What is interesting and what I haven't read in any research papers is that a few women seem to get vasculitis after giving birth. Met one who got it after getting her first child, and I guess an author who wrote a book about vasculitis had that happen. Wonder if any of our members had that happen?

    The rheumy who gave a lecture to us once about vasculites said that extreme physical activity (like running a marathon) can trigger a relapse. So was intererested if it can also start the vasculite, like for instance in those couple of cases where it started after giving birth.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  9. #29
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    This may seem really out there, but I recently re-watched a movie that says illness is caused by the influence of negative or worrying thoughts on our body.
    We all know stress plays a role... I find the idea interesting.
    It also said you could heal yourself with constant happy thoughts and picturing yourself as being perfectly healthy in your minds eye.


    Sent from my iPhone while driving on the freeway.

  10. #30
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    Nice idea GJ...then there are all the chemical structures, invasions of unwanted bacteria...yeah, sure, I can think those things right out of my mind...then again, I don't have much of a mind left...so now what do I do? Watch a movie? Sure...why not, goes well with pred when I'm bummed!! Sighs...still dreaming, aren't we!!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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