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Thread: New Flair

  1. #21
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    hope you feel beter soon and you getthings sorted DEEx

  2. #22
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    Oh, Lightwarrior. I am so sorry you're feeling badly.

  3. #23
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    Just listened to the dictation of my CT, multiple kidney stones and a angiomyolipoma. I was down to one kidney stone which they tried to lilthrotripsy two weeks before my Wegs symptoms initially appeared, I have thought that the lithrotrispy was the trigger that kicked in my sypmtoms (not caused but the trigger that started the fires burning). They were unable to completely blast that last stone and I have been so sick since that I haven't wanted to mess with it. This could explain the kidney pain and blood in urine. I didn't ask today(if he has contacted Langford) because I felt so bad, but this is first time my rheumy has called the shots (my other docs are friends, don't want me to be sick and willing to negiotiate with me) I was sitting in my office waiting for the labs to call up(not working, but why leave until I know results) when he called me and told me to immediately stop my cytoxan, (which means he was watching for labs also) that I was home for at least two weeks and if I wanted to argue he would admit me. So here I am, at home using some of closely guarded time. I still have time and am coming to grips with this is why I have been saving it. I'm not convinced that there is not flaring going on, but I did hear on the CT that lungs were clear and my lungs looked like crap when I was active.

    So.. does this mean that I won't be able to use Cytoxan?? I feel a little stronger at this moment. Thanks for the support. My youngest daughter Valerie will post if I end up in more trouble and can't. (Even though I'm a glass 1/2 full person I know this may not be the worst yet)

  4. #24
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    Kidney stones-- no wonder you've been hurting! I get them all the time because of a drug I'm on. The best way to get rid of them quickly is to take liquid phosphorus. The brand I use is Standard Process (Phosphood). You can only buy it from health care professionals.

    Call SP to ask for a local office that has it. Contact Us

    Since I get stones with no warning, I'm never without a bottle. It'll dissolve stones very quickly--turns them right into sand. It doesn't interact with any drugs or herbs.

    One indication of a phosphorus deficiency is excessive tartar on your teeth.

  5. #25
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    Lightwarrior you sound like you have gone through so much. I really hope everything starts going better for you. I am really new to all these medical words and tests. What is contrast and what does WBC stand for. I hope you are feeling better soon.

  6. #26
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    Contrast is a dye type material that radiologists use to make images show up on CT scans more clearly. Apparently, at least according to the radiologist I spoke with, they often don't need contrast, but when docs order it they give it anyway. WGs should be very careful about taking contrast, at least according to what Merkel said in the webinar I watched. WBC is white blood cell count.

  7. #27
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    LIghtwarrior, so glad to hear that your CT of your lungs scan is clear. Just take it one day at a time. Once you get a hold of the WG specialist they will be able to answer your questions about your medicine's. She does a whole body scan and asks alot of questions and then they come back and let you know immediately. So before you leave that day of your appointment she will go over any questions or concerns. I think you got the point. I like to repeat for some reason.

  8. #28
    Doug Guest

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    @Lightwarrior- glad somethings (lungs) still work for you! Kidney pains are no fun, for sure, and I hope your doctor (or the SP?) is able to bring that into line, soon.

    I asked the mother of a friend of mine once, "Which is worse pain? Childbirth or kidney stones?" She told me, in so many words, she'd go through childbirth over and over before she'd endure any more kidney stones.

  9. #29
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    Just a point of interest on the Dye Contrast subject -

    In the early days of my diagnosis, when I was still a subject of great interest, the research guys did an experiment on me. They took some blood and isolated one of its components that they thought was a marker for Wegener's and then marked it with a radioactive isotope. They then put this back into me and did a body scan. All the areas affected by Wegener's showed up as bright spots! They were all very pleased about this, I hope it helped the research.

  10. #30
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    I have heard that as well. Have never experienced kidney stones, thank God!

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