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Thread: Questions about getting Diagnosed

  1. #11
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    That's interesting about the tingling. It makes sense actually. Thank you for sharing that you had to get mad...It's not really in my nature to be that way, but maybe that's the only way to get things done!

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    Oh gosh...a lung biopsy, but I guess you do what you have to do to get the right diagnosis. Yes...I have had a chest x-ray. It's come back completely normal. I am taking your advice. I am going to be determined and angry if I need to be. I actually am feeling that way already! It's not what I want to do, but you have to play the hand you are dealt!

    My fingers and toes both alternate between being cold and blue/purple, normal looking and temperature, and being red and hot. I can't really predict it. I don't have any splinter looking things though.

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    Sorry everyone...I thought that I was replying to each person's post and not I've realized that all my posts are at the bottom

    JanW - That was my question actually. I tested negative to C-ANCA. Does that mean that WG can be ruled out definitively? I will write down the test for eosinophil granulocytes and ask my doctor about it. Thank you for the info.

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    Don't worry about it Amy. With any Autoimmune vasculitis disease can be so overwhelming, so there is so much to learn. Even though I am a experience RN I never ran across a WG patient. So I had to learn about this disease by doing research and asking many questions on this forum and then questioning the doctors. You will get so much information on this forum and will help you.

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    I'm afraid that there are no test results that will rule out Wegener's or many to confirm it. The disease is notoriously difficult to pin down and it is often a case of an experienced doctor weighing up the probabilities. A positive biopsy showing Wegener's granulomas is the only solid evidence, but this is often difficult or impossible to obtain.
    Jack

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    Quote Originally Posted by Amy View Post
    The kidney function is what I am most worried about. I have read that the kidneys can decline very quickly, but my GP doesn't think that there is anything that can be done to prevent kidney failure, even if we did catch it early. After I read your post, I called our pharmacy and my husband bought the dipsticks. I tested my urine and there was a moderate amount of blood and a trace amount of protein. That doesn't seem very good to me
    I would question his statement. Early aggressive treatment can head off lots of complications from Wegener's. My kidneys were failing before I got diagnosed and I believe they would have failed if my treatment had not been very aggressive. Eventually they recovered partially so I have about 50% kidney function now. Blood and urine tests are needed to monitor kidney function cause you won't notice the loss of function in your feelings until it is very advanced. See a nephrologist as soon as you can and get pushy about getting in to see a vasculitis specialist.

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    Amy, I agree with everything the others have said. Your rheumy is completely wrong about being unable to prevent kidney failure. It's exactly how drz said it--gotta treat it properly and immediately to prevent, minimize or even reverse damage. I'm very concerned that you have moderate blood in your urine. Along with your other symptoms it doesn't sound like you can wait. I suggest you demand an emergency referral to Mt Sinai. You need to get in yesterday.

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    Even though a lot of members have kidney involvement there are very few of us with transplants or requiring dialysis. I think this proves that it is entirely preventable with correct treatment.
    Last edited by Jack; 12-31-2010 at 04:01 AM. Reason: typo
    Jack

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    Amy - It's not you negative C-anca that concerns me as much as your POSITIVE p-ANCA. Anyone with internet access can easily see which two or three AI diseases this correlates with, so I really don't understand why a rheumy could not. You can certainly have WG and have a negative C-anca, but a positive p-ANCA generally points to a related (in the sense that its vasculitis), but not the same disease.

    They all have the same awful (likely fatal) outcome if not treated, and a doctor at least somewhat experienced with vasculitis will be able to diagnosis one vs. the other. My only quibble with Jack's comment is that I would say that researchers believe that positive C-anca in addition to elevated P3s and symptoms are 'solid' evidence of WG -- many people aren't getting biopsies prior to diagnosis, unless they have granulomas in a part of the body where this is easy to do. So please don't think that you will need to have what could be an extremely invasive procedure (e.g. lung biopsy) to get to an diagnosis.

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    I agree that a combination of all these without a +ve biopsy result can be considered as solid evidence and it is the basis upon which many on the forum have been diagnosed. What I was trying to highlight was the fact that you can still have Wegener's even if some of these results are not as you might expect, but there is no arguing with a +ve biopsy showing necrotising granulomas of the type associated with Wegener's..
    Jack

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