User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 20 of 20

Thread: New Member

  1. #11
    Join Date
    Aug 2010
    Location
    UK
    Posts
    163
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Joanne, I try to catch up with the posts on here every Friday - ( it's a really great forum by the way ), but I do not post usually, as I am not very eloquent unlike many of the caring, compassionate folk on here. But, I was very upset by your post !
    I was finally diagnosed in 1998 and live in East Anglia so I cannot help with recommendations as far as doctors are concerned but I would suggest you try googling 'Vasculitis UK-Healthunlocked' as the members there are from all over the UK . Hope this helps - but come back here and let us know - we care !!
    Best wishes Fran

  2. #12
    Join Date
    May 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Fran, thanks for your really helpful post, I am going to check out the 'Vasculitis UK-Healthunlocked' and I can't agree more that this is a great forum, full of caring people like yourself who really want to help. I was feeling very, very low before I joined the forum, but getting advice and seeking help has really made a difference, and has spurred me on to keep going. Still tired, aching, and stiff, but there's a bit of spring in my 'shuffle' now! Not beaten yet! Best wishes Jo

  3. #13
    Join Date
    Oct 2011
    Posts
    107
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Joanne,It is very sad that you must deal with uncouth people on top of everything else you are going through.Many of us here have saddle noses or what we call weggies nose.I have one and have had a few negative remarks made about it.I hope you can get your health problems under control,and have Rhinoplasty done.Please,vent here anytime.
    "You can tame anything,except the human tongue"

  4. #14
    Join Date
    May 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Titus 3:2, I do hope I can get my health problems under control too, and thanks for your post. You are certainly right about 'uncouth' people, no-one asks to be ill and it doesn't help having to deal with other people's ignorance, even my own sister, who has remarked more than once about 'what a mess' my nose is, as though I'm not aware of it! If I didn't laugh about it with my son, I would cry, (my sister is notorious for being tactless at times). Thankfully I have a very good sense of humour which doesn't often fail me, even in the direst circumstances! Thanks for your support, (I like the expression 'weggies nose' too, which sounds preferable to saddle nose I think).

  5. #15
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,056
    Post Thanks / Like
    Mentioned
    26 Post(s)
    Tagged
    0 Thread(s)

    Default

    Jo, you can also send private messages to people from UK. try Geoff, freakyshcizogirl, Hammy, DEE, Gwen and Gilders. those I remember for now.
    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.

  6. #16
    Join Date
    May 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Alysia, thanks for your message and the list of names. I've started a new thread as you suggested to try and find more info about a good ENT consultant/hospital. I found it really interesting that you had two nose biopsies before you got a diagnosis. My main concern is that nothing is showing up on my results -biopsy, bloods, scans, x-rays, no inflammation, although the biopsy was in 2012, and the last hospital tests I had were over a year ago. I have also had anemia and chronic Vit D deficiency which were successfully treated with no improvement in my symptoms, so I'm really stumped? I also registered with a new GP recently and they did a raft of routine tests for new patients which just showed up a fluttery heart and high blood pressure (probably stress!!). I get the impression that this is not an easy condition to pin down! I'm also looking at the Vasculitis Health Unlocked site which another member recommended, which looks very interesting. Thanks again for your invaluable help.

  7. #17
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,925
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    I agree with Alysia that you would get some responses from those members if you private message them. But starting a new thread is a good idea, too. They are usually on here often enough that they should catch up with you eventually.
    Anne, dx'ed April 2011

  8. #18
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,056
    Post Thanks / Like
    Mentioned
    26 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Joanne View Post
    Hi Alysia, thanks for your message and the list of names. I've started a new thread as you suggested to try and find more info about a good ENT consultant/hospital. I found it really interesting that you had two nose biopsies before you got a diagnosis. My main concern is that nothing is showing up on my results -biopsy, bloods, scans, x-rays, no inflammation, although the biopsy was in 2012, and the last hospital tests I had were over a year ago. I have also had anemia and chronic Vit D deficiency which were successfully treated with no improvement in my symptoms, so I'm really stumped? I also registered with a new GP recently and they did a raft of routine tests for new patients which just showed up a fluttery heart and high blood pressure (probably stress!!). I get the impression that this is not an easy condition to pin down! I'm also looking at the Vasculitis Health Unlocked site which another member recommended, which looks very interesting. Thanks again for your invaluable help.
    many of us had problems untill they got diagnosis of wg. wg can manifest itself in multiple ways.
    I hope that you can soon find a specialist in vasculitis and get to know what is going on and how to treat it. good luck and please update us.
    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.

  9. #19
    Join Date
    Apr 2014
    Posts
    69
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the family this is the greatest group of people have u had a ct scan of lungs and sinus? It took a year for me to get a diagnosis. They had to do wedge biopsies of right lung lost 1/2 of the lower lobe and still have one more node in left. I had to to to Duke to get diagnosis. This disease appears to be do hard to diagnose . The group will help you to get to the right places for treatments and the support is so great. Agsin welcome and I hope you get some answers quickly

  10. #20
    Join Date
    May 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi keegan55, thanks for your post, so sorry to hear about your experience. I agree that WG is a pretty tricky condition to diagnose. I had a lung ct scan over 12 months ago after shadows showed up on my chest x-rays and had a couple of scans in 2005 and 2012 I think on my sinuses. Had surgery in 2005 to correct a deviated septum and to remove a blockage made it much, much worse, and they've been a complete mess ever since. I was told that my nose never healed and I now have a very large perforation and lots of destruction, it's like a black hole up there! They tested for sarcoidosis but again, nothing showed up. Have just emailed Vasculitis UK and doing more research to get a second opinion. Thanks for your help!

Page 2 of 2 FirstFirst 12

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
  •