Doing my homework on vasculitis

Have been reading this site like crazy and trying to think about all this information and keeping it fresh in my brain. I read a blog and they said searching the net can be scary and not to trust too much but to find a good source. I am an American and so I went to the Mayo Clinic site and it was a great simple read for understanding CHurg-Strauss syndrome. CSS. it also had several other vasculitis types to read about as well. Check it out. It compiles everything I have read from this site and you knowledgable folks. It also ends with finding support such as sites like this.

mayoclinic.com/health/churg...

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  • Hi dskizs

    You are correct about being careful what you read on the web. We at Vasculitis UK have an excellent website, you may like to have a look: vasculitis.org.uk/

    PatriciaAnn

  • Woo thanks. I am new at this web site and just feeling my way around. I feel fortunate that I had chosen a new female doctor in march and she took all my info I had and quickly made an appointment with 2 very good doctors in town my lung doctor and the immune specialist. So far I am waiting for an appointment for my nasal biopsy. This along with flexuating anca scores should at least confirm or eliminate my diagnosis by the immune doctor of vasculitis. Now back to reading. Thanks again

  • Dear dskizs,

    We are all fortunate to have found this site and even more fortunate that John, and Sue, started it! If you contact John there is a 'road map for vasculitis' available either via a download, or a 'hard copy', for a small free; I have no idea how much it was cost to send it international. I'm sure that if you left a message for John he would reply to you. Do 'look around' the site and feel free to answer questions posed; that builds to knowledge still further. Clearly you can pose your own question, should you wish to.

    Good luck anyway

    AndrewT

  • Thanks Andrew . The biopsy was horrible. Done this am and still bleeding out the nose. Have to go again in the am and I am sure he will want to cauterize it again. But the procedure was so bad I almost fainted. I will have the results Monday. In the meantime I am reading like crazy. John has been so great and encouraging. Will continue that contact. So far both doctors have said they do not feel like I have it but something in my deep soul says "be prepared". From what I have read many of you have had similar experiences and yet pressed the envelop so to speak to get some kind of answer for all the symptoms and then bam "oh, I guess you do have it" I am at peace and whatever the universe sends my ways i will manage. Thanks again!

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