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Thread: Reality Check

  1. #61
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    In my country its a bit similar in the way that if you have a smaller illness it can be difficult to get an appointment. Like I lived in the capital and tried to get a doctors appointment for insomnia but the local hospital told me they only see the available times for 6 weeks and none are available. It was the only time I tried to get an appointment there, since I was generally very healthy.

    Then we moved to a suburb to the next city, about 25 minute drive away. Here I've had zero problems getting appointments. What we need to do is call to the health centre between 8am and 10am and they'll call back before noon and either ask me to go talk to the nurse (maybe an hours wait) or then they give me a time to the doctor which is usually for the following day.

    With wegs its a bit different, when I was released from the hospital they wanted to send me to some rheumy clinic. The following week after I got from the hospital they checked the situation again and found out they were unable to accept new patients, so I was asked back to the nose-ear-throat hospital where I'm treated and won't see a rheumy. They do the best they can, and my doctor is very nice and she seems smart. Of course its sad that wegs isn't one of her specialities though, but she does consult specialists. Dunno if there is anything I can do, or should try. I only have phone times for her, saw her in Aug and next appointment is in October but they monitor my blood every two weeks and call me with the results.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  2. #62
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    Hi Sanye, this damn illness has some very sad stories, always deal with your wegs doc as my doc has never seen it before till i came along and you will find some docs will never see it. I have had 2 flares and the second one looked like it was with me forever as well, but we did get on top of it. For what its worth i do feel for you, love from us all.

  3. #63
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    In reply to Sangye -

    I was very fortunate to fall in the right hands and receive a diagnosis. Many other docs have said that I look healthy and they were shocked that I had a diagnosis. It is amazing how callous some healthcare professionals can be. This is a reminder of how you need to be your own advocate or have someone close advocate on your behalf.
    Last edited by lag713; 03-22-2014 at 11:23 AM. Reason: don't understand how to reply to a reply in a thread - new and confused...

  4. #64
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    Quote Originally Posted by lag713 View Post
    In reply to Sangye -

    I was very fortunate to fall in the right hands and receive a diagnosis. Many other docs have said that I look healthy and they were shocked that I had a diagnosis. It is amazing how callous some healthcare professionals can be. This is a reminder of how you need to be your own advocate or have someone close advocate on your behalf.
    I had similar results. Five docs all telling me I wasn't sick enough to have Wegeners. Believed them for two years, until I wound up in the hospital coughing up bloody flecks, with major lung involvement with Granulomas and lesions/nodules. I should have pushed more and went to the health system I am using now for a second opinion. But when 5 docs are all telling you, they know better right? Wrong!!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  5. #65
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    Quote Originally Posted by MikeG-2012 View Post
    I had similar results. Five docs all telling me I wasn't sick enough to have Wegeners. Believed them for two years, until I wound up in the hospital coughing up bloody flecks, with major lung involvement with Granulomas and lesions/nodules. I should have pushed more and went to the health system I am using now for a second opinion. But when 5 docs are all telling you, they know better right? Wrong!!!

    At the end of the day, you KNOW your body better than anyone else. It's so hard to be strong with doctors when you feel unwell anyway, it's so hard.

    I find it hard to explain to my doctors that although my blood work is okay, I feel so ill that most days I think i'm dying.

  6. #66
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    Great to see you Gwen but I'm sorry that you are still feeling so unwell.

    The wonder drug on here, so all say, is RTX - is this an option for you at all ??
    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

  7. #67
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    Quote Originally Posted by mishb View Post
    Great to see you Gwen but I'm sorry that you are still feeling so unwell.

    The wonder drug on here, so all say, is RTX - is this an option for you at all ??
    Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening!

    X

  8. #68
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    Also good to see you Gwen, hang in there. OK stupid question, what about CTX or MTX or Imuran? Imuran I couldn't take due to allergy but was taken to remission with CTX.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  9. #69
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    Quote Originally Posted by gwenllian111 View Post
    Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening!

    X

    Gwen, that sucks

    So not such a wonder drug for some people then
    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

  10. #70
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    Quote Originally Posted by gwenllian111 View Post
    Yeah, i've tried Ritix but I am allergic to it. What are the chances of that happening!

    X
    I am sorry Gwen. what is your reaction to it ?
    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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