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  1. Replies
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    My experience has been, the subglottic stenosis...

    My experience has been, the subglottic stenosis slows during remission and speeds up during flares.
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    These are my thoughts. When you first get...

    These are my thoughts. When you first get diagnosis those around are concerned and on board with understanding but as time passes it becomes as a matter of fact and they stop seeing it or not see it...
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    Protein Chemistry - C3 and C4

    I have noticed over the last couple of months when I get my blood test results, the page which would normally contain the Protein Chemistry - C3 and C4 is blank. Does anyone know why this would be?
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    NSW is pretty large to better know who to...

    NSW is pretty large to better know who to suggest, where in NSW are you?
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    Sorry to hear. I have had five surgeries to date....

    Sorry to hear. I have had five surgeries to date. Most were laser to remove scar tissue and balloon dilation, my most recent was removal of part of the scar tissue. The decision not to proceed in...
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    Did you find the answer you needed. If not...

    Did you find the answer you needed. If not trachea stenosis is diagnosis'd by putting a scope down your nose and looking.
  7. Thread: Hi all

    by Swb21188
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    Hi Snickerz Before diagnosis my parotid gland...

    Hi Snickerz

    Before diagnosis my parotid gland became swollen and inflamed which as well as being painful it reduced blood flow to the facial nerves. This resulted in dumbness in the side of my...
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    Good Luck, I hope you get a diagnosis no matter...

    Good Luck, I hope you get a diagnosis no matter what the result. If it is WG don't panic treatment is available and you will be able to live a relatively normal life.
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    Interesting I am glad this appears to have worked...

    Interesting I am glad this appears to have worked for you but I already restrict carbs and sugar and I only started snoring after Wegener's damaged my nose and sinuses. It was one of the first...
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    Sometimes it takes family time to understand and...

    Sometimes it takes family time to understand and come to terms. Take your husband with you to doctors appointments maybe it will help him. Is the another Rheum you can try to get into quicker? If...
  11. Thread: Negative ANCA

    by Swb21188
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    3,783

    Hi Brillantlight, I think we all understand how...

    Hi Brillantlight, I think we all understand how frustrating this is for you and how scared you must be at this point.
    It is a good thing you have been prescribed a higher dose of Prednisone....
  12. First thing the Dr's will do is deal with any...

    First thing the Dr's will do is deal with any life threatening damage, then get the WG under control there are a number of options. In Australia we call Rituxan is called Rituxmib. Most people will...
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    Yes, my hair did thin out but I came back after I...

    Yes, my hair did thin out but I came back after I finished with Cyco
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    Given flu symptoms are one of the first symptoms...

    Given flu symptoms are one of the first symptoms of Weg and flares your worries were completely reasonable. I spent months thinking I had a series of flu's. It' better to be safe than sorry.
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    Sorry, I had to go to work. I am glad they didn't...

    Sorry, I had to go to work. I am glad they didn't send you home. Did they get in touch with your Rheumy?
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    Virus is what they say when the don't know what...

    Virus is what they say when the don't know what they are dealing with. Try and get them to let you stay until you have either seen a specialist or feel well enough yourself.
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    are you still at the hospital

    are you still at the hospital
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    I hate ambulance rides. You will have to tell me...

    I hate ambulance rides. You will have to tell me yours. I don't tell my "family anything" because really is all my own fault if only I would realise the error of my ways and get born again. And yes,...
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    Hi Alicia I bet you love your mother inlaw, Ha...

    Hi Alicia

    I bet you love your mother inlaw, Ha Ha. It is so good you got a diagnosis and treatment in time and will be able to get to a new form of a normal life. Don't worry about you other...
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    Given WG is global not restricted to one area is...

    Given WG is global not restricted to one area is in't likely to be caused by environmental factors. Otherwise there would be pockets of Hot spots where it's quite common. Also during my childhood we...
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    Hi, It will depend on which kind of stenosis you...

    Hi, It will depend on which kind of stenosis you are experiencing. One is swelling, granulation etc this one will respond well to medication. The other is scar tissue which keeps growing, this has...
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    I feel for your torment at this time, it is far...

    I feel for your torment at this time, it is far worst to have a sick child than to be sick yourself. It sounds as though you have found a Dr who is switched on to what will be required to get this...
  23. Thread: Negative ANCA

    by Swb21188
    Replies
    15
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    3,783

    Negative ANCA

    During May, June and July I was having a flare. My Rheumy prescribed RXT infusions in August,nothing unusual here.
    My September blood test my ANCA was 7 then in September and October it was...
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    I was referring to on information and support on...

    I was referring to on information and support on WG. Sorry you felt you were being hijacked, but this forum and others do provide information and support to everyone. There are also many doctors who...
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    You do realise this forum was started by an...

    You do realise this forum was started by an Australian. Australians do support each other you only have to ask[
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