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    I agree with the ladies, please continue to post...

    I agree with the ladies, please continue to post about your journey. We wish you the best of luck!
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    I also had Bell's palsy a couple of years before...

    I also had Bell's palsy a couple of years before my Wegener's sympyoms started. Interesting.
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    Just out of curiousity for you folks who have...

    Just out of curiousity for you folks who have stated that you cannot take Spirulina, Chlporella, and Tumeric. Why? Is this something that is bad for Weggies?
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    Quick update, since I haven't been on the forum...

    Quick update, since I haven't been on the forum in a while. Any free time I've had I've either slept or hung out with my kids.

    I had my 4th and final Rtx infusion 9 days ago. We kept having to...
  5. Welcome Magnolia! I am currently in the...

    Welcome Magnolia!

    I am currently in the middle of 4 weekly Rtx treatments myself. I've tried every immunosuppresent drug out there, I believe, and it works best for me. Back 8/9 years ago when I...
  6. Thread: Positive ANCA

    by LisaMac
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    How much longer will you be in Fl?

    How much longer will you be in Fl?
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    Yikes! I hope you get the answers and respect you...

    Yikes! I hope you get the answers and respect you deserve.
  8. Thread: hi

    by LisaMac
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    Welcome Tracy! This isn't AA, tell us more...

    Welcome Tracy!

    This isn't AA, tell us more about yourself. As I have recently found, this is the place to find answers to your questions and friends to lend an ear. Hope to hear more from you!
    ...
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    Welcome! I don't think we compare 'degrees' of WG...

    Welcome! I don't think we compare 'degrees' of WG here. It just sucks, no matter what your particular symptoms. My experience hasn't mirrored yours but it wouldn't surprise me if someone had what...
  10. Thread: Positive ANCA

    by LisaMac
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    4,851

    Describe your bizarre symptoms. Wegeners symptoms...

    Describe your bizarre symptoms. Wegeners symptoms usually seem unrelated but, because it causes inflammation to the small and medium sized vessels, it affects many random things. It's good you're on...
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    Wow, 25 years! What an inspiration. And what a...

    Wow, 25 years! What an inspiration. And what a wonderful wife, you are lucky, indeed. I enjoyed your writing style and hope to hear from you again. We all long for remission and love to hear...
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    Nah, this isn't thrush. It's like ulcers on the...

    Nah, this isn't thrush. It's like ulcers on the roof of my mouth.
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    Yes, they do. This time isn't too bad though,...

    Yes, they do. This time isn't too bad though, I've been out of the house every day.
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    Good idea. This happens every time I get Rtx.

    Good idea. This happens every time I get Rtx.
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    I had a pretty good day today. Still have some...

    I had a pretty good day today. Still have some fatigue, stuffy sinus and ears, but was able to spend a good chunk of time with each of my kids. That makes me happy. Does anyone else get mouth sores...
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    Hey Rob! It looks like you've gotten a pretty...

    Hey Rob!

    It looks like you've gotten a pretty warm welcome from our little band of misfit toys, lol, I'm so glad you've found us.

    I'll just take a minute to encourage you to stay the course,...
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    Yeah, I agree. Most of us get our labs done every...

    Yeah, I agree. Most of us get our labs done every month or so. Things can go bad so fast with this disease.
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    Yes I did, I'm resting today but apparently,...

    Yes I did, I'm resting today but apparently, according to my kids, I look better. I think they're just trying to be nice, but I'll take it. I just feel wiped out with a headache. Not too bad so far....
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    Here we are: Caleb is the oldest at 23, below him...

    Here we are: Caleb is the oldest at 23, below him is his wife, Maggie with Jack-Jack, then Jared, my 13 year old (please pray that his siblings allow him to see 14), below him is Hannah, then me, and...
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    I will be getting 4 weekly infusions since its...

    I will be getting 4 weekly infusions since its been almost 18 months since I last had any.

    Actually, both of my daughters plan to move to Hawaii this summer. They will be 20 and 18 by then. My...
  21. Thread: Symptoms...

    by LisaMac
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    VES is very similiar to our sed rate. An...

    VES is very similiar to our sed rate. An inflammation marker.
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    Whatthewhat, my Rheum has other Wegener's...

    Whatthewhat, my Rheum has other Wegener's patients and one of his office worker's son has it as well. News to me!
  23. Thread: Symptoms...

    by LisaMac
    Replies
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    2109 Try entering the information in the...

    2109



    Try entering the information in the search bar on my screenshot. I think it may help you, unfortunately it's not in English, lol! It does talk about protein in the urine as an...
  24. Thread: Symptoms...

    by LisaMac
    Replies
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    Ok, I found it. Your VES seems to be our SED...

    Ok, I found it. Your VES seems to be our SED rate, which is an inflammation marker.
  25. Thread: Symptoms...

    by LisaMac
    Replies
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    Sorry, I can't figure out what VES is. I'm in...

    Sorry, I can't figure out what VES is. I'm in California btw and am very jealous that you have a such a wonderful sister in Italy!

    I just did a very simple search and found that proteinuria can be...
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