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Type: Posts; User: NatriceRomeo

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  1. Replies
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    Re: My journey so far

    Hi Karen,
    Welcome to the forum. I am sorry and disappointed in your experience with Drs. I have had my share of ignorance from them myself. At least now you have a diagnosis and can work on feeling...
  2. Re: Mal Brown. Diagnosed 10 years ago but new to the forum

    Hi Mel,
    I was diagnosed in Sydney but have since moved abroad. I am sorry that you have felt alone in this journey but you are not! I have said before this disease is not for the faint of heart. I...
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    Re: New, in Palm Springs

    Hi Jan,
    I do hope you are feeling better now. I know it can be overwhelming but us people diagnosed with GPA are hard core and never give up. You got this! We all are pulling for you!
    Natty

    ...
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    Re: Split decision on diagnosis

    Aaron,
    I concur with everyone here encouraging you to seek a second opinion from someone whom has experience with GPA. I would also encourage you to see an ENT with experience in this disease. I...
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    Re: In process of being diagnosed

    Hi Lea,
    Welcome to the forum! I too had been diagnosed as ďlimited GPAĒ, this was 23 years ago. The thought being that no major organs are affected. I even had one Dr say that all the tests that...
  6. Re: Journey to being diagnosed, treated, and already first flare up

    Onirin,
    It certainly sounds like you have had a tough go of it. It is frustrating when a simple test is negative and they have to go for the most invasive test for an answer. I, myself am fairly...
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    Re: Happy Birthdays Thread

    Happy Birthday Andrew!


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    Re: Transplant

    Gliders,
    I can empathise with you. It is so frustrating when things do not go your way. Do the Drs think your kidney function will increase or is a kidney function in the 30ís going to be your...
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    Re: Glad to be diagnosed

    Oops sorry! Should have read the whole thread. [emoji849]


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    Re: Glad to be diagnosed

    Hi Geoff,

    Iím glad you got a diagnosis. I tried Mycophenylate but it never worked for me. When I was first diagnosed I was placed on Methotrexate and prednisone (of course[emoji3525]). After...
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    Re: Happy Birthdays Thread

    Happy belated birthday to the Peteís!


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    Re: Newly diagnosed and Divorcing

    Iím so sorry. It sure sounds like you have a lot of stress in your life right now. I know from my personal experience, stress is a trigger. That being said, until things have been decided, it doesnít...
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    Re: pberggren memorial thread

    Oh Alyssa,
    I wish there were words to take this pain away. I think of you both often. Iím sending a virtual hug.
    Natty


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    Re: Transplant

    Gliders,
    I will take the news as good about the antibodies. I am sorry about the kidney function. How are you feeling? Do you feel better, worse or same since the transplant? How is your Dad...
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    Re: Happy Birthdays Thread

    Happy birthday Anne! Hope you had a great day!
    Natty


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  16. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Kim,

    Welcome! Have you had the rituxin infusion? How are you feeling? Weíre there any problems? I find myself that I feel pretty good for a few days (that would be the solumedrol) my body sure...
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    Re: My GPA story

    Hi Rosie,
    Iím sad that you were diagnosed & sick but so very happy you found this forum. I have found the wonderful people here open, honest & full of information. I have had this disease for a long...
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    Re: Lena's story

    Welcome Lena,
    I know I feel quite blessed to find a group of people whom understand. I have to tell you I have had this disease half my life & it never occurred to me to look for a support group! I...
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    Re: Transplant

    Gliders,
    Congratulations on the graduation of your son! Iím so pleased there is finally some good news for you. I still think of you every day!


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    Re: Transplant

    Gliders,
    So relieved things are a little better and you are able to walk further. I am also very relieved that you dad is doing well! Hopefully things will continue to improve.


    Sent from my...
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    Re: Transplant

    Iím sorry gliders! I was hoping and praying that you would be recovered by now & dancing on tables! Iím still thinking of you


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    Re: Happy Birthdays Thread

    Thank you everyone! You are all so wonderful!
    Natty


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    Re: Transplant

    So happy that you have good news finally! Still thinking of you everyday & follow your recovery.
    Natty


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    Re: Hi everyone

    Sorento, what a terrible story! Please get a second opinion. I do know WG can affect the heart from what my rheumatologist has said it causes congestive heart failure. I think if the Drs could...
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    Re: Just diagnosed from Queensland Australia

    I was diagnosed in Australia when I was a teenager. It took about 3-4 months. It initially manifested with a swollen eye lid. I went to a GP & they told me o should not be so concerned about my...
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