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Thread: Yet another conscript....

  1. #11
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    Quote Originally Posted by Al View Post
    The stats suggest that about 70-80 percent of GPA patients have C-ANCA, anti0 CP-3 as histological and serum evidence.
    Another welcome, Al. Enjoyed reading your story, just sorry you have had to experience it. Obviously you have put in alot of time studying this subject. I also am interested in the ANCA. I seem to keep testing positive for both MPO and PR3, which I find confusing. I have kidney involvement, lung nodule, sinus, mastoid, and brain stem inflammation. I also have SLE (lupus). I guess it does not really matter as the illnesses (even the lupus) are treated with the same drugs, but have you come across the possibility of having both GPA and MPA? I tried looking up "CP-3", and could not understand what that is.

    It was so nice of you to pay a tribute to Jack. We all miss him. If you read back into the forum, you will be able to get to know him too!

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    Sorry, Trudy--a lip of the fingers (or brain!): PR-3 is what I meant! But, yes, you are several scenarios in which both kinds or ANCA are present. The diagnosis of a specific disease is slippery, and, in any case, slightly irrelevant of the type of ANCA. (Indeed, some current theorize that a third kind of ANCA, anti LAMP2, may be the main culprit, even where the other two are present. But that is not, at present, tested for.) The standard nomenclature lists GPA, MPA, and Churg-Strauss Syndrome as the thre most common ANCA vasculitides. GPA's big characteristic is granuloma formation. Churg-Strauss differs from MPA mostly in that asthma is active. But they are are related, and can involve more than one ANCA type.

    Al

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    Hi Al and welcome.
    I also enjoy reading your descriptive way of writing things.

    For a "muso" you are very literate, well spoken and seem to have a great memory for all that you have discovered/researched about this disease.

    Your website is wonderful and it must be fantastic having such an instrumental family.

    I look forward to many posts from you, but like everyone, am sorry that you had to be on here.

    Take care
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  4. #14
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    Yes, Michelle, we have to keep on smiling. Life can be bizarre, complex, and a whole lot of stuff, but seeing it as funny is both appropriate and healthy--or at at least healthier than giving in to the bad stuff. And life is, if nothing else, a barrel of laughs.

    Yet, you insult me: I am hardly a "MUSO"! In fact, I am a recovering musician. I live with one, have one kid who is a professional in the same field (and married to same), and another kid who is an amateur musician (and married to same). Besides, I deal with musicians all the time, so I don't actually have to be one.

    As it turns out, though, nature doesn't care a fig about any of that. All of us, regardless of race, creed, religion, political persuasion, national origin, or bank accounts, are just a coin toss from dread ailments. I think it is not about who laughs longest or loudest, but who laughs (or, if the need hits you, sings, sobs, rants, or rages) at all...!

    Personally, I aim to ply my trade (such as it is, and whatever it is), as joyously and hilariously as I can, as long as They let me. And, if I can help others into the bargain, that's just ducky.

    Al

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    A sense of humor is a blesssing. Mine is wicked..thankfully! Through all the worry and pain the moments of laughter are a gift. I recently sent an email to my cousin, who is a dr, dicsussing my Wegeners..in detail. I soon dicovered that i sent the email to Williams-Sonoma instead...I chuckle at the thought of the peron who might have read all the gory details.

    My neighbors have a great Halloween party every yr.. In light of some of my friends totally NOT understanding what is wrong with me I have decided to add to their curiosity( or lack their of) and come dressed in a mask, gloves and sterile hosp gown. One of my BFF's who is teased for being a hypocondriac will dress the same.

    What has made you laugh recently? Share your stories!

  6. #16
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    Welcome Al, and ditto all the previous comments. I was very lucky, if there is such a thing with this disease, in that I did not suffer the many other ailments my fellow WG patients suffered. I "only" suffered from kidney problems (lost 60% of capacity - don't need dialysis), lost all feelings in my feet from the ancle on down, only partial feeling in my right hand. I am a "morning" person and still get up at 5:00 AM (been doing it since I was 14 years old), but by 2:00 PM, at latest at 3:00 PM I'm done for the day. Again welcome, and good luck.
    Rudi K.

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    Quote Originally Posted by KimH View Post
    A sense of humor is a blesssing. Mine is wicked..thankfully! Through all the worry and pain the moments of laughter are a gift. I recently sent an email to my cousin, who is a dr, dicsussing my Wegeners..in detail. I soon dicovered that i sent the email to Williams-Sonoma instead...I chuckle at the thought of the peron who might have read all the gory details.
    One that that gave me a guffaw, Michelle, is the Williams-Sonoma story!

    Your Halloween thing reminds me of a favorite trick I do while I travel. On the plane, I always wear a R-95 mask. Of course, the technical reason is that other people are contagious, but your travel-mates assume that you are contagious. On full flights, the trick doesn't work so well, but often I have gotten a whole row to myself!

    Al

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    Quote Originally Posted by RudiK View Post
    I am a "morning" person and still get up at 5:00 AM (been doing it since I was 14 years old), but by 2:00 PM, at latest at 3:00 PM I'm done for the day.
    Rudi K.
    5:00, Rudi? (!) That's about bedtime at my house. I am low enough in the IQ department before noon that I don't even try to do useful work until later. Fortunately, it picks up. During my stint in boot camp--I mean, at the hospital--I became semi-famous for my post-midnight laps around the ward. The staff would try to encourage me to go back to bed and "relax". I had to inform them that relaxing made me nervous.

    Al

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    Welcome Al.
    Brendan

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