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Thread: New from the UK

  1. #1
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    Smile New from the UK

    Hi all. My name is Sam...i was told on Monday that i have Weg and have to see a specialist.

    It seems funny to me how different everyone's story is...so here is mine.

    I was first told i had Lupus 3 years ago. But i'm guessing that diagnosis was wrong if i now have this.

    I came here by way of ENT, which started 3 years ago after i had a big nose bleed, out of no where. Got referred to the hospital and had tests, nothing came back...bit odd. So my consultant decided to do a biopsy to see if anything was hiding in my nose. Tests came back inconclusive. After that i was told "you only see the consultant once" and was then passed on from person to person for 2 years and was told it was my weight, or it was just something i had to live with. I may be overweight but i think everyone can agree a nose doesnt hold a significant amount of that weight!

    So my nose condition has moved on from nose bleeds to other things...which i wont go into at this stage...suffice to say i am well aware of my nose on a daily basis, and my sinuses and i also have Neuralgia.

    I digress...so after 3 years i go back to my normal 3 month routine appointment in May and get told i have a hole in my nose in my septum and my nose is collapsing.

    So i have another biopsy and blood work...and well here i am.

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    welcome aboard the WG rollercoaster Sam.... lots of good people here with lots of info.

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    lol thanks

    i honestly dont know how to feel at the mo...could burst into tears at any moment.

    Suppose just have to wait til i see the specialist

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    Hi Sam.
    I hope you are not going to have to wait too long. Wegener's has a habit of moving very quickly when you least expect it and you can't afford delays. What are your symptoms at the moment?

    These are very early days for you so you can expect to go through the whole range of emotions. It takes a lot of coming to terms with, but knowledge of the disease helps a lot and this Forum is a good reliable source. In the meantime, if you want to rant or have a shoulder to cry on, just post and someone will come along to lend some support.
    Jack

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    Thanks Jack, feel like i need a hug!!

    My symptoms are mainly saddle nose, hole in my septum, sneezing, crusting in my nose, nose bleeds that are heavy and long. And lately i've had what feels like phlegm on my chest that clears if i cough but i suppose it could be the WG?? Never really thought much of it.

    It shouldnt be too much of a shock really. I have been told for years now it could be WG but no one really followed it up.
    The ENT department in the Herts and Essex region are terrible. I dont think they ever cure anyone cos their waiting lists are getting longer and my appoiments always get cancelled.

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    Hi Sam, welcome to the group. Ditto to everything Jack said. I think I went through every emotion possible in the first half-hour of hearing I had Wegs. And I continue to ride the emotional rollercoaster, 4 years after diagnosis.

    I hope you can get excellent care quickly. We've sure had a lot of new members from the UK lately. A few months ago we got a bunch of Aussies. I think the Wegs dog must be a herding breed.

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    Well its cos its a rare disease, people are collecting now obviously. lol.

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    If you have nose bleeds and crusting you should try irrigation.
    Try these threads -
    http://www.wegeners-granulomatosis.c...rrigation.html
    http://www.wegeners-granulomatosis.c...now-about.html
    It works very well.
    Jack

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    Ya, thanks for that Jack...I use Sterimar as perscribed by the ENT consultants. and Vaseline...as i was told to do. But reading on that thread it says Vaseline is bad??
    Who knew.
    There are days when the crusting and sinus pain gets so bad i dont wanna touch my nose.
    And times when i see my reflection in a shop window or a photo of me all i see is my collapsing nose...

    Feeling a bit sorry fr myself tonight, as you might have guessed.
    Reassuring tho that people are going through the same as me.

  10. #10
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    Welcome Sam, We all here feel your pain. The sinus rinse is great. I do them twice a day. Yes ..see a Weg specialist soon.

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