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Thread: Positive ANCA

  1. #11
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    How much longer will you be in Fl?

  2. #12
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    Good morning, Flint! I know what you mean about the nonchalance of doctors. I ran into it before dx and I still do. My doc didn't think I had WG because I had a barely positive ANCA, while other docs thought I did, and a nasal biopsy finally proved that I did. The only one in my group of docs who was willing to treat WG was the resistant one, and I still feel he is nonchalant and dismissive of things I bring up, and like you, I have to learn most of what I know either here on the forum or on the internet. And we have to be careful about the internet. But where else do we go? I could go to a more qualified doc and I'm sure everyone on here thinks I should. But I'd have to travel some distance, am single and low income, and have double vision when I drive, all kinds of excuses, but the truth is I am fortunately doing very well with the treatment I've gotten, despite the questionable doc. Not everyone is that lucky. Still, I'm getting names of other docs together in case things turn for the worse, and should get established with one of them in advance of that. You will read many stories on here of where people get treatment and how it goes for them. Reading the stories of others is a great way to get familiar with the ins and outs of having vasculitis, if that's what you have, and it will help make sense of what you read elsewhere. I am probably also a member of the vasculitis group you belong to on Facebook, as I belong to several of them, and they are good, too.

    I realize you are on steroids, and that is good, whether you have vasculitis or some other inflammatory condition. If you have vasculitis or one of the other AI diseases, you need to additionally be on meds that specifically suppress the immune system, where pred mainly targets inflammation. You've probably read about these meds in your research..... cyclophosphamide (CTX), methotrexate MTX), rituximab (RTX), and some others. If you are only in Florida for a month and only on steroids, you may be OK, as many of us went a couple years or more with symptoms before dx and treatment. But given the way you feel, it seems like taking a chance, and I guess if something really serious happens you will end up in the ER unless you can find someone to treat you there. And when you get back to NY, you need a doc in your corner who will take you seriously and really find out what is going on. There should be some of those in that state and in FL, too! All I can say, I guess, is good luck, and keep us posted!
    Anne, dx'ed April 2011

  3. #13
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    Flint, my intention here is to scare you into action: I literally 'died' when I assumed I was sick but could power thru it like I have everything else in my life...NOT...lungs were shattered glass, mucous filled sinuses, bruises all over, rashes to boot, wasn't breathing well (duh), taking Ibuprofen like it was candy...body just said enough is enough, went to ER, was put into coma cuz body couldn't sustain for 10 days, then a very long dx/rehab/recovery period. I am good today (in a relative sense!), was a lucky one in the long run...but my putting off what was fairly obvious probably cost me a few moments of a longer life and, for that matter, life at all. Sheesh...DO NOT put this off...please...
    Last edited by Dirty Don; 02-27-2015 at 04:26 AM.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  4. #14
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    Flint,
    If you do end up on the ER make sure the dr provides you with a vasculitis expert.
    Tell them that you are ANCA positive.

  5. #15
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    Hi flint glad you're finding comfort in connecting with others. . My advice to you would be to maybe try and not "look up" symptoms and diseases so much because it can add to a heightened state of anxiety especially if you already feel like you're Dr's are not able to diagnosis you at the moment. . It's great to educate yourself but self diagnosis can be really destructive to your mental and emotional well being. Unfortunately a positive ANA doesn't give an automatic lupus or any solid autoimmune diseases diagnosis. it can fluctuate from positive to negative during periods of flare and while on treatment . I have relapsing polycondritus with overlapping lupus and Wegener’s.. they're all autoimmune diseases with some overlapping symptoms but it is my positive and abnormal labs, scans and biopsies that gave me firm diagnosis. The world of AI diseases is vast and so many of them have very similar or overlapping symptoms,can be systemic and effect all your connective tissues and have a tendency to run in packs so if you have 1 you can have a few like me or more. its really easy to drive yourself crazy researching without direction .. hope you feel better soon

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