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Thread: Let's talk about "limited" Wegeners...

  1. #11
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    Default Re: Let's talk about "limited" Wegeners...

    I think, in my mind anyway, that "mild" and "limited" are the same thing.
    Thank you for replying
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    Default Re: Let's talk about "limited" Wegeners...

    Couldnt agree more JBee.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by Dirty Don View Post
    "Limited' is not in reference to the degree of the disease. Rather it refers to the more specific areas of infection. In that sense it is 'limited' and not through out the body. Mayo doc described it as such.

    Interesting point Don (Hello by the way! Havent spoken to you in years )

    Maybe its me having issues with medical terminology? The wording is somewhat derogatory to me, and i've felt this for a long time. An example of this is when they write "patient COMPLAINS of..." I'm not complaining.
    I wonder if it should shift to "Patient SAYS she is experiencing..." sounds more patient focused to me.

    I wonder if "localised Wegeners" would placate me?
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    Default Re: Let's talk about "limited" Wegeners...

    Thanks Christina.

    I think your final comment is spot on "GPA is called a 'systemic' disease.
    The whole system is involved, even if it is called only 'limited'..."
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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  9. #15
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    Default Re: Let's talk about "limited" Wegeners...

    If certain organs aren’t affected by Wegeners, rather than calling it “limited” perhaps a better term is “not yet”.

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by freakyschizogirl View Post
    Interesting point Don (Hello by the way! Havent spoken to you in years )

    Maybe its me having issues with medical terminology? The wording is somewhat derogatory to me, and i've felt this for a long time. An example of this is when they write "patient COMPLAINS of..." I'm not complaining.
    I wonder if it should shift to "Patient SAYS she is experiencing..." sounds more patient focused to me.

    I wonder if "localised Wegeners" would placate me?
    I have seen references to a diagnosis of GPA with involvement of (list specific areas) eg lungs, kidneys, sinuses, etc.

    I think this a much better diagnosis as it gives more useful information about the exact nature of the individuals illness. I would have five or six areas listed.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by drz View Post
    I have seen references to a diagnosis of GPA with involvement of (list specific areas) eg lungs, kidneys, sinuses, etc.

    I think this a much better diagnosis as it gives more useful information about the exact nature of the individuals illness. I would have five or six areas listed.
    I like that drz. GPA localised to the sinuses, localised to lungs... etc.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by freakyschizogirl View Post
    I like that drz. GPA localised to the sinuses, localised to lungs... etc.
    I think some experts like the wording of involvement instead of localized since involvement seems broader and leaves more room for acknowledging the disease might be or become active in other areas and is not limited to any specific areas. Most of us with serious GPA have seen new symptoms show up in other areas than those active when we got our initial diagnosis. The initial areas might be harder hit and incur the most damage. The areas of initial involvement seem more likely where a flare shows up but new symptoms can and often do develop over the years.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Let's talk about "limited" Wegeners...

    I can't bear the "limited" title

    I was considered to have "limited wg", "only" in my lungs, nose and ears in the first years. So for the few couple of first years the only treatment that I got was pred and bactrim. No immune compromised meds, due to the excuse of "limited wg". Only after my nose has collapsed my dr. Started to search for a better treatment. Tried Imuran, plaquenil, mtx then rtx for few years. Now on Leflunomide.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Let's talk about "limited" Wegeners...

    Quote Originally Posted by Alysia View Post
    I can't bear the "limited" title

    I was considered to have "limited wg", "only" in my lungs, nose and ears in the first years. So for the few couple of first years the only treatment that I got was pred and bactrim. No immune compromised meds, due to the excuse of "limited wg". Only after my nose has collapsed my dr. Started to search for a better treatment. Tried Imuran, plaquenil, mtx then rtx for few years. Now on Leflunomide.
    I believe in the past "limited" was usually applied to GPA where there was no major organ involvement. The lungs would certainly have been a major organ.
    Knowledge is power! Wisdom is using it to make good decisions!

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