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  1. Oh my gosh thank you so much everyone! thank...

    Oh my gosh thank you so much everyone!

    thank you so much Nikki!!


    Someone just donated $100 on Phil's memory. Thank you all so much,
    Phil would love this x
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    Wegeners and Pregnancy

    Hi

    I just thought i'd post my experience on having Wegeners, and pregnancy, in case it's of any help to anyone planning a family? I hope it helps. :confused:

    I was first diagnosed with...
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    My consultant is Dr Nash, and he is an expert in...

    My consultant is Dr Nash, and he is an expert in Wegeners and he treats younger patients.

    He is based at University Hospital of Wales Cardiff, tel. 02920 742626 (his secretary), and he is...
  4. Thread: Flare up??

    by Gwenllian
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    They're sooo cute!! I have a border collie, he's...

    They're sooo cute!! I have a border collie, he's like an old man in the house. :)

    I've not heard of Ritixumab helping conceive, but I found that having Ritix prior to conceiving, meant that I had...
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    My experience was quite extreme really. I...

    My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did...
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    is there a way of donating money towards the...

    is there a way of donating money towards the maintenance of the site? i know it's not cheap, and i'd like to help if i can :)
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    Just posting to say that initially, I didn't have...

    Just posting to say that initially, I didn't have tracheal symptoms when I was first diagnosed, - my tracheal stenosis came apparent a few years later, although it was misiagnosed as asthma for 7...
  8. Thread: Symptoms

    by Gwenllian
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    Sounds as if it could be a problem with the...

    Sounds as if it could be a problem with the trachea. I find it much worse lying down with my tracheal stenosis, but also, on any kind of exertion, ie. walking, getting up, going up and down the...
  9. Thread: Flare up??

    by Gwenllian
    Replies
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    4,064

    Thanks for all your lovely replies. After...

    Thanks for all your lovely replies.

    After seeing that awful GP, I took myself to the ER. Luckily for me that I did, as I was indeed having a flare up. It was complicated though, after some...
  10. Thread: Flare up??

    by Gwenllian
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    4,064

    I went to the out of hours GP tonight, and she...

    I went to the out of hours GP tonight, and she was awful! She just sent me home, as though i was worrying about nothing.
    She looked at my swollen and inflammed hands, and told me to go back to my...
  11. Thread: Flare up??

    by Gwenllian
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    Jack did your hands and fingers get swollen? I...

    Jack did your hands and fingers get swollen? I can't get my wedding ring off - this has literally come on in the past 3 days. thanks for any info x
  12. Thread: Flare up??

    by Gwenllian
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    thanks for the reply. i will do asap, i've got a...

    thanks for the reply. i will do asap, i've got a rash now too :eek:

    can kidney disease come on quickly with WG?
  13. Thread: Flare up??

    by Gwenllian
    Replies
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    4,064

    Flare up??

    Hi
    Just posting for some advice, to see if my symptoms ring any bells with anyone???

    I gave birth 5 weeks ago, and typically, I tend to flare up post pregnancy. Once with Tracheal Stenosis, the...
  14. Thread: Liver and WG

    by Gwenllian
    Replies
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    Liver and WG

    Hi guys
    How are you all? Sorry I haven't posted for ages!
    I have been in reasonable health until recently, where i've been getting nausea, flu like symptoms (that come and go), loss of appetite...
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    I made the difficult decision to take legal...

    I made the difficult decision to take legal action against the NHS, I was so devastated. I found out a few weeks ago that I won my case, really pleased, and hope that this will make mis diagnosis of...
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    Hi I do have a tracheal stenosis, it was mis...

    Hi
    I do have a tracheal stenosis, it was mis diagnosed as asthma for over 7 years! I asked my consultant (at that time), if I could have TS, and he told me categorically no, and thought I was a...
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    thank you so much for your replies, you make me...

    thank you so much for your replies, you make me feel as though i'm not going crazy! I feel like such a hypochondriac sometimes :(

    I haven't had a chest CT for years. During my first ever flare up...
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    Thank you for your reply. Whenever I see a...

    Thank you for your reply. Whenever I see a doctor, the listen to my lungs and tell me it sounds clear...but why do I struggle so much then? My tracheal stenosis is fine at the moment, so i know it's...
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    Breathlessness

    Hi
    Sorry I haven't posted for ages, been really busy.

    As far as I know, for the past few months i've been ANCA negative, but i've been getting so breathless with a dry cough which makes me gasp...
  20. Thread: vision loss

    by Gwenllian
    Replies
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    I started to lose the vision in my left eye in...

    I started to lose the vision in my left eye in 2007, and I had an optic neuritis (some inflammed veins in the back of the eye). Steroids helped, and chemo, and ritixumab. No problems now.
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    interesting. i took 'mesna' when i was on chemo,...

    interesting. i took 'mesna' when i was on chemo, to protect my bladder, but that's about it . x
  22. Hello I've been ANCA negative for about 18...

    Hello

    I've been ANCA negative for about 18 months now, and I can honestly say, that I have felt pretty bad for most of that.

    Recently, I lost the hearing in my left ear, my chest was bad,...
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    Another paranoid WG question!!

    Hi!

    Has anyone ever had digestive disorders as part of wg? I'm anemic, loss of appetite, weak, generally unwell etc.
    Am on a waiting list for some further tests with gastroenterology.
    thanskx
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    About a week ago, I was sitting down one evening...

    About a week ago, I was sitting down one evening watching tv, when I had the most excruciating pain in my left ear - like a stabbing pain. After a few hours, the pain started to subside and a clear...
  25. Thread: Ears

    by Gwenllian
    Replies
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    Hi I saw ENT today, and he said I have a WG...

    Hi
    I saw ENT today, and he said I have a WG flare up...with trapped fluid in the middle ear or something...I was a bit shocked, I thought it was an ear infection!
    Not sure what treatments to start...
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