User Tag List

Likes Likes:  70
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 24

Thread: Just diagnosed from Queensland Australia

  1. #11
    Join Date
    May 2013
    Location
    Australia- Northern N.S.W
    Posts
    166
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Hi Rob, When first diagnosed, I was seeing my GP, an ophthalmologist, a ears nose and throat specialist, a kidney specialist, a thoracic specialist, and my rheumatologist. They all played their part in getting me where I am today, I was very lucky to have such a brilliant, caring team of doctors. Its a lot to take in at first, but as the doctors have got on to it early, you should respond quick, sounds like you have a great team as well, I was 51 when first diagnosed, and have had this surprise package (wegs) for 6 years, had 3 months off work, returned to work part time, then full time ever since, it slows me up some days, but I cant complain. Dont read too much into the doom and gloom you might read on Doctor Google.

    Regards Woz...

  2. Likes annekat, Alysia liked this post
  3. #12
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,869
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Welcome to the forum, Rob. I've been at this about as long as Pete, since about this time in 2011. But I had a delayed diagnosis of about 2.5 years.. I was under the care of a good ENT who treated me for a massive bilateral ear infection followed by umpteen sinus infections, allergies, and hearing loss. It wasn't until it went into my lungs that I got a diagnosis and began treatment with cyclophosphamide and prednisone. Those brought it under control and now I've been on methotrexate for maintenance for about 7 years and am doing reasonably well, without the energy level of before. I'm 66. Because of delayed diagnosis, I received the typical damage in my nasal cavity, sinuses and lungs, resulting in a saddle nose, permanent hearing loss, and diminished lung capacity. But still I'm better off than many others. I'm lucky enough to have no kidney involvement so far, though I'm due for regular labs to rule that out along with other aspects that must be monitored. You are indeed lucky to have had such a great medical team to diagnose you so quickly, and that the treatment is going so well. There are quite a few Aussies in the group besides you and Woz, and I know it is a big place, but perhaps you can meet some of them or at least get acquainted here. The internet is a godsend in its ability to bring together people all over the world for mutual support and friendship. I have met 4 Weggies in my area, and one of them has been supplying me with firewood out of the goodness of his heart. The quality of people who get Wegs and stick with the forum is of the highest order. So, ask any questions, someone will answer them, and continue to share what's going on with you. We are interested, and I'm glad you found us .

    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  4. Likes woz, Masha, RiverJoy liked this post
  5. #13
    Join Date
    Mar 2019
    Location
    Central Queensland, Australia
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Hey Woz ...

    Dead right about Dr. Google, the Internet is is a wonderful thing, you just have to get past the 99.9% of rubbish that's on it.

    The team here at Rockhampton hospital have been nothing short of miracle workers diagnosing me so quickly. I feel so so so lucky as when I read how some folks have gone years before they were diagnosed.

    I intend to write to the QLD Health Minister and the Hospital board to extend my huge appreciation to all the care team that took care of me. Too often folks are quick to complain and reluctant to compliment. I know the care team were just! doing their jobs but, what a job they did for me and they should be acknowledged for the tremendous work they do.

  6. Likes drz, woz, RiverJoy, annekat liked this post
  7. #14
    Join Date
    Mar 2019
    Location
    Central Queensland, Australia
    Posts
    7
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Hi Anne,

    On reading your experiences it just reiterates how lucky I was being diagnosed so quickly. I guess for me the planets just lined up starting with my GP who, clearly was on the ball when she first spotted the oddities in my blood/urine tests.

    The care team at the hospital were also part of those planets lining up. They saw something was very wrong and thankfully spent days blood/urine testing, cat scanning and CT scanning me and mercifully diagnosing me with such speed that hopefully !!! the minimal damage has been done to my kidneys.

    It has hit me a bit and, as I said in my initial post has altered my life/lifestyle already. I saw a renal Consultant today who indicated the signs were looking good, the numbers they wanted to go south are heading that way but, as a precaution they're keeping me on the horse ! strength steroids and check again in a weeks time. The only other indication they gave me was I'd likely be on cyclophosphamide for 6 months then all being well be on something not quite as aggressive for maybe up to 2 years ? I guess I've just successfully jumped the first hurdle in what might be a long race.

    Best Regards

    Rob

  8. Likes annekat liked this post
  9. #15
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    73
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    What a great success story from Australia!

    That is my problem with the Vasculitis Foundation here in the US.
    Other than fundraising, they do nothing to next to nothing to bring awareness to all the front-line physicians that encounter new Auto Immune (AI) patients (including us GPAs/wegies).
    These doctors (GPA: ENTs, nephrologists, GPs, pulmonologists, orthopedics, dermatologists, and rheumatologists) are still unaware of AI and start treating symptoms and miss the underlying deadly and destructive disease.
    I would think that Vasculitis Foundation would be contacting every one of these specialists and family doctors on behalf of GPA (and all other 100+ AI diseases) and put and end to this misdiagnosis/late-diagnosis madness once and for all. /(end of rant)

    G'day everyone!!
    Last edited by seied; 03-19-2019 at 04:44 AM.

  10. Likes annekat, drz, Masha, woz, Alysia, bobjannj liked this post
  11. #16
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,869
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Seied, I don't know much about what the VF does or doesn't do, but I'll take your word for it. I hope that since 2011, when I was dx'ed, more docs have become aware.

    My ENT is a good one but I think known for his surgical skills, and hadn't seen any cases of Wegs in his career, but had seen plenty of cases of recurrent sinus and ear infections, often caused by allergies, which seemed to be the case with me.

    For asthmatic symptoms he referred me to a good pulmonologist, but who had only seen one case of Wegs. When my lungs got really bad, a chest x-ray looked suspicious to him, even though it had passed the muster of the radiologist, so he put me in the hospital overnight for tests and observation, thinking I might have endocarditis, what ever that is. There I had a chest CT scan, among other things. On the basis of that, the excellent hospital doc suspected WG, but said I needed to arrange a biopsy.

    Right around that time my saddle nose appeared! Talk about good timing. So I got a quick appointment with the ENT, showed him my nose, etc., and he and his nurse stayed late to do a nasal biopsy on the spot. He was sure I had WG and was very apologetic for not catching it sooner. So he, for one, now has a greater awareness about WG.

    Waiting for results, I went back to the pulmy, who denied that I probably had WG! I told him about the biopsy, took my glasses off, and showed him my nose! He called the ENT, and the positive results had just come in, even though nasal biopsies are said to often be inconclusive. So he ate crow, and since there aren't any true WG specialists in my community, ended up being the one to treat me, and he did OK . I had already looked at the forum and other web resources and knew that the treatment he was prescribing was correct. And the rest is history.

    This pulmy retired a couple years ago and I'm now with a rheumatologist who had seen about 20 cases of WG before me. Which still is not a lot! He doesn't do much of anything except get lab results and keep telling me to take the same meds. But he's nice and it's sufficient for now. There's always Seattle if I get in real trouble. I have told this story many times! But thought the new people might be interested.

    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  12. Likes drz, woz, Alysia liked this post
  13. #17
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    73
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Quote Originally Posted by annekat View Post
    Seied, I don't know much about what the VF does or doesn't do, but I'll take your word for it. I hope that since 2011, when I was dx'ed, more docs have become aware.

    My ENT is a good one but I think known for his surgical skills, and hadn't seen any cases of Wegs in his career, but had seen plenty of cases of recurrent sinus and ear infections, often caused by allergies, which seemed to be the case with me.

    For asthmatic symptoms he referred me to a good pulmonologist, but who had only seen one case of Wegs. When my lungs got really bad, a chest x-ray looked suspicious to him, even though it had passed the muster of the radiologist, so he put me in the hospital overnight for tests and observation, thinking I might have endocarditis, what ever that is. There I had a chest CT scan, among other things. On the basis of that, the excellent hospital doc suspected WG, but said I needed to arrange a biopsy.

    Right around that time my saddle nose appeared! Talk about good timing. So I got a quick appointment with the ENT, showed him my nose, etc., and he and his nurse stayed late to do a nasal biopsy on the spot. He was sure I had WG and was very apologetic for not catching it sooner. So he, for one, now has a greater awareness about WG.

    Waiting for results, I went back to the pulmy, who denied that I probably had WG! I told him about the biopsy, took my glasses off, and showed him my nose! He called the ENT, and the positive results had just come in, even though nasal biopsies are said to often be inconclusive. So he ate crow, and since there aren't any true WG specialists in my community, ended up being the one to treat me, and he did OK . I had already looked at the forum and other web resources and knew that the treatment he was prescribing was correct. And the rest is history.

    This pulmy retired a couple years ago and I'm now with a rheumatologist who had seen about 20 cases of WG before me. Which still is not a lot! He doesn't do much of anything except get lab results and keep telling me to take the same meds. But he's nice and it's sufficient for now. There's always Seattle if I get in real trouble. I have told this story many times! But thought the new people might be interested.

    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Yes, every one of these specialists should have GPA (and other AI) in their radar.
    Vast majority of these eventually arrive at AI when AI should have been suspected at the beginning.
    We all had multiple, concurrent symptoms at the onset; sinus infection, arthritis, fatigue, flu-like that does not go away, weakness, etc.
    Every doctor should assess each the patient and be on the lookout for these things.

    In my case, I persisted until finally the 5th doctor diagnosed me and started my treatment that very same day.
    In all, it took me 3 weeks to start suspecting that what I had was not just a very nasty flu, and another 6 weeks to finally get diagnosed and avoided permanent health damage.

    I went back to my ENT and GP, (two of 4 doctors who missed my set of symptoms) brought brochures on GPA and educated them; made it clear that they missed and opportunity to be real heroes.

    Ed.
    Last edited by seied; 03-19-2019 at 06:36 AM.

  14. Likes annekat, drz, Masha, Alysia liked this post
  15. #18
    Join Date
    May 2013
    Location
    Australia- Northern N.S.W
    Posts
    166
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    It was my ophthalmologist, who got onto it first, and got a blood test to check my ANCA, only a day before my rheumatologist told me she thought she new what it was and scheduled the same test as the ophthalmologist, my eyes were the telling factor he said, they were red, like an albino rabbits eyes, freaked the hell out of any one who saw them, my GP had never heard of Wegners (as it used to be called) and was running out of tests to do, when I was in hospital, i had a visit from many doctors, and medical students who were interested to learn about it, I told my Wegs story many times, and still do, the more everyone knows the better.

    All the best Rob, unlucky to get this Wegs speedbump, lucky to drive out the other side with all your wheels on.

    Regards Woz....

  16. Likes Masha, annekat, Alysia liked this post
  17. #19
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,698
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Hey Rob, welcome to the best forum in town.

    From another Aussie, you are doing great, and as others have said, things do get better, as you have found with your hearing.
    My hearing also came good after high doses of pred, and my eyes, just as Woz's were, were bright red.

    If you are on facebook, we have an Oz and NZ Wegener's/Vasculitis group, and also we have a Vasculitis symposium in Brisbane on the 24th August.

    Better health to you in the weeks and months ahead, and …….
    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

  18. Likes Alysia, woz, annekat liked this post
  19. #20
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,110
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just diagnosed from Queensland Australia

    Quote Originally Posted by woz View Post
    It was my ophthalmologist, who got onto it first, and got a blood test to check my ANCA, only a day before my rheumatologist told me she thought she new what it was and scheduled the same test as the ophthalmologist, my eyes were the telling factor he said, they were red, like an albino rabbits eyes, freaked the hell out of any one who saw them, my GP had never heard of Wegners (as it used to be called) and was running out of tests to do, when I was in hospital, i had a visit from many doctors, and medical students who were interested to learn about it, I told my Wegs story many times, and still do, the more everyone knows the better.

    All the best Rob, unlucky to get this Wegs speedbump, lucky to drive out the other side with all your wheels on.

    Regards Woz....
    I remember being exhibit A in a large university teachng hospital for many medical students and interns. I also gave many spiels and encouragement to be aware of our symptoms.
    Knowledge is power! Wisdom is using it to make good decisions!

  20. Likes annekat, woz, Alysia liked this post
Page 2 of 3 FirstFirst 123 LastLast

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
  •