User Tag List

Likes Likes:  0
Page 2 of 5 FirstFirst 1234 ... LastLast
Results 11 to 20 of 43

Thread: Finally decided to reach out...

  1. #11
    Join Date
    Feb 2009
    Location
    Saint Peter, Minnesota
    Posts
    460
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I do not have problems with coughing and I certainly do not want to get pregnant to eliminate that type of problem.

    If it is nasal drip I suggest cleaning out your nose two times a day with a salt/saline solution. You can buy them over the counter or make your own. I do and it has worked wonders for my nasal drip situations.

    Just a thought!

  2. #12
    Join Date
    Aug 2008
    Location
    Mission, BC, Canada
    Posts
    1,802
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hruncie, welcome. I too have never thought that I would join any support group ever, yet here i am and I can't tell you how happy it has and is making me.
    Jolanta

  3. #13
    Doug Guest

    Default

    Quote Originally Posted by jola57 View Post
    Hruncie, welcome. I too have never thought that I would join any support group ever, yet here i am and I can't tell you how happy it has and is making me.
    Another benefit in the long term is you start to learn about new theories and new treatments for WG. One of the big benefits is sharing knowledge of WG specialists and treatment centers, I think.

  4. #14
    Join Date
    Aug 2008
    Location
    Mission, BC, Canada
    Posts
    1,802
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    You are so right Doug. With so many of us all over the world we are bound to pick up a lot of info and share with others. We live this stuff whereas our doctors only treat it. So who is going to better at gathering new treatments ?
    Jolanta

  5. #15
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    The more we share our stories, will be able to to help each other out. I learned so much from everyone here that it feels like going to the doctors office without the exam.

  6. #16
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Me too! And, no exposure to germs!

  7. #17
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Everyone on here has first hand experience - some good, some bad, but it all builds up into a huge knowledge base that easily exceeds that available to general doctors. You can soon become your own expert and only the medical specialists will know more.

    I've recently spent time on an orthopedic ward where the doctors were clueless about my condition and the effects of my drugs. I spent a lot of time trying to educate them and stop them from changing my medication - many of my blood test results fall outside the normal limits and this upset them considerably! If I had not understood my own condition well and refused to let them mess with me who knows what they would have done. They eventually consulted with my Wegener's specialists and then they left me alone! But you need to build up this level of knowledge so that you have the confidence to stand up for yourself when you see doctors making mistakes. This site can supply much of the information you need to carry with you.
    Last edited by Jack; 05-31-2010 at 12:55 AM.

  8. #18
    Join Date
    Feb 2010
    Posts
    1,319
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Jack you are so right
    i had the same experiance recently with a stay in hospital ( blood clots on the lungs0 the doc kept going to look on the internet
    i told them they could consult with GP or WG consult and they agreed to leave meds alone
    i had to talk with a pharmist about my meds before they would let me carry on taking them and as you say it is only through the knowledge and advice that i get from this site that i have more confidence to be able to say what i need instead of agreeing with them all the time
    I hope you get to feel alitle more comfortable soon Jack Take care of you DEE x

  9. #19
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I've had other docs try to change my Wegs drugs, too. Like they're gonna waltz in and make a big discovery after meeting me for 5 minutes....

    My favorite example is from last year, when this Wegs flare was just beginning. It seemed like pneumonia and I paged the on-call rheumy at JHU. He said to stop the Cellcept and go to the ER. The Wegs rash I get on my legs went wild within a few hours, so we restarted the Cellcept the next day. When my Wegs doc found out I had stopped it, he said "Don't ever stop it unless you've talked to ME. No matter what." I said, "What if I'm on fire?" He replied, "Take it anyway." LOL

  10. #20
    Doug Guest

    Default

    Quote Originally Posted by Sangye View Post
    I've had other docs try to change my Wegs drugs, too. Like they're gonna waltz in and make a big discovery after meeting me for 5 minutes....

    LOL
    A large part of my issues with ENT doctors is everyone of them but one I've had experience with approached me this way. It totally shatters any confidence I might have in a doctor to have him or her have me figured out on the first consultation, from my medical history alone, without first talking with me, asking me questions, examinining me, ordering tests as needed, answering my questions: you know, being a proper doctor!

Page 2 of 5 FirstFirst 1234 ... LastLast

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •