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Thread: Not very happy about my docs visit

  1. #31
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    I think even most (all) docs believe that too. My ENT said the middle aged stentosis certainly wasn't for no reason, it's just that "we haven't discovered the reason yet."

  2. #32
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    This brings up a question for those medically savvy folks out there. What is the process of these nodules...biological what is happening? Are the nodules usually attached in the actually blood vessel? I feel like if I can get better visual of what/how my body is growing this thing, it would be helpful. When those say they have lung involvement w/ wegs does that always mean they have nodules present? Sangye how many nodules did you have after 2.5 years? Did you have ct scans done at that time?

    Basically, I was scanned in July looking for signs for wegs. When nothing showed a local rheumy could not dx me and I do not think Cleveland Clinic would have at that time. It was only the 2nd scan taken Sept. 15 that showed these two nodules and gave a more concrete dx for this disease. (Quite scary what a less than 2 month gap can make). Then at the end of Oct. one had gotten smaller and the other slightly bigger. CC waited until this visit to do the scan again, and now the one is even bigger but the other has decreased again. However, they said we really should not see any after 5 months of treatment (or at least that is the goal).

  3. #33
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    WG has damaged my lungs by causing asthma like symptoms, I have obstruction according to the lung function test. Parts of my lung function test are of a 80 year old. I delveloped a good size nodule which was removed. Very painful. Can I say that again," Very Painful!" thanks ....I really needed to get that out.
    Last edited by elephant; 02-05-2010 at 02:19 PM.

  4. #34
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    Snooz, the nodules reflect tissue death (necrosis) and inflammation. Tissue death occurs in 2 ways.

    The first occurs as the small and medium-sized blood vessels become inflamed, disrupting blood flow to the tissue.

    The second occurs when there is chronic tissue inflammation. Inflammatory chemicals are highly irritating to tissue and chronic inflammation causes tissue breakdown. The tissue breakdown then causes more inflammation, and the cycle persists.

    I have 2 to 4 nodules. None are very big. My lungs don't tend to form granulomas, they tend to hemorrhage. I've never had a period where we weren't doing a lot of CT scans. The nodules snuck in about a year ago. I never had them before.

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