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  1. #1
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    Hi, my name is Jo, please bear with me as I'm new to this and very tired as I've spent most of the day on public transport going to and from a hospital appointment. I attended an appointment in February at my local ENT department and was told by the consultant that I had Wegener's and that in the last 20 years he had only seen one person with this condition but strangely I was the third person that month who he'd diagnosed this year. I can't describe the relief after 8 years of hell to be told what was wrong with me. In 2009 I was diagnosed with M.E. but refused treatment at my local clinic as my GP flatly refused to recognize that I had the condition and no-one ever got around to explaining what was also causing my other non M.E. symptoms i.e. chronic ENT symptoms, irregular periods etc. I was told by another ENT consultant that atrophic rhinitis was causing my sinus woes and so that was that. To cut a long story short, my symptoms worsened and began to multiply and I was diagnosed with WG in February. Imagine my dismay when I rolled up to the Rheumatology department today after hours on a bus to be told that I now DON'T have Wegener's and that the ENT consultant should not have told me I had this condition as all tests that were done at Rheumatology and also a sinus biopsy were inconclusive. I had the biopsy in 2012, and other tests such as bloods, scans and x-rays were over a year ago and found no sign of WG. No further tests were carried out today. My main symptoms are chronic, bloody nasal crusting, a very large nasal perforation and a lot of destruction inside my nasal cavities, nose bleeds, voice changes, tickly dry cough, constant watering eyes which sting at times, blocked, painful, popping ears which have fluid behind the eardrum and one ear won't pop at times, tinnitus, some loss of hearing, difficulty swallowing, post nasal drip, headaches, joint aches and pains which are very debilitating, chronic fatigue and feeling very crap all of the time. Especially hard as I used to be very active with tons of energy. My Mum had Rheumatoid Arthritis and died of kidney failure in her fifties. Thyroid problems are rampant in my family - my thyroid is elevated but not enough to receive treatment. I am 46 by the way and previously to 2005 was in very good health. Please could anyone recommend the best ENT department in the UK which I can try to be referred to? I am DESPERATE! The North West area would be more convenient but I will travel if I have to! Thanks in advance for your help.

  2. #2
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    Welcome Jo...great place for you to be right now. I know 40 changed things...hmmm, so did 50...omg, and 60 was on the boards with this crap...sighs. Throws coffee mug...not really folks...LOL. I ain't got to 70 yet...thrills!!! Anyway, whether you have WG or another AI it doesn't really matter cuz you have to be treated and not argued over like a toy doll...c'mon, your docs need to get their act together. While not familiar with your area, there should be some on here who may direct you to an AI/WG experienced clinic or such.

    It is not unusual for our kind to be the first for a doc...I was and they screwed it up and WG almost killed me. But, I am fortunate for whatever reasons. I'm not glad the docs feel they are seeing more of us, but it helps all of us as the docs enter AIs into their fields of view. All of your symptoms point to WG or at least an AI of some sort, there are many. I had many of those you described, and you'll see all sorts of symptomatic behaviors described on here...you will become educated on here even if you don't have WG.

    Keep asking, sharing, venting, whatever...best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome to the forum Jo. Whew you've been through the wringer. Sorry you've had to go through all of that. We have several members from your neck of the woods and they should chime in tomorrow or if they're up late, tonight. Don't stop looking for a doc that can help you. It's a grueling thing to have to do in addition to being sick, but sometimes it's necessary.

    There is a wealth of information on the site that can help you.This is a great forum full of loving and supportive people so you've found a great place. Feel free to ask questions, rant, vent, and comment. It's all welcome and you are not judged. Hugs to you.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Welcome to the forum, Joanne. I'm sorry for the years of discomfort and frustration you have gone through. Your symptoms do sound like WG. Cindy is right, there are several members in the UK, not all in the same area, and you should be able to get a good ENT and rheumatologist, with experience in WG, recommended to you. It's not unusual to go a couple or more years without a dx, but 8 years is a little much, and you need treatment soon. Nasal biopsies can be inconclusive even with positive WG disease activity, and someone more experienced could determine that you do indeed have it without all the evidence. I'm glad you found us, and please keep us informed on how this all goes. I hope you get some real answers and relief soon.
    Anne, dx'ed April 2011

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    Hey Jo,

    There's not much else I can add that hasn't already been said. Sorry that you've been through so much, but also glad that you've found the forum. Lots of really nice people that are willing to answer questions or just listen when you need a little understanding kindness.
    Hopefully some of the UK members can put you in touch with docs that can help.
    Take care and as said by others, keep us posted.

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    Thanks to the members who replied to my post, good to know there are caring, knowledgeable people out there who understand my situation. I also have insomnia so it's great to use a forum where there's always someone there! Looking forward to finding out more about good ENT departments in my area or further afield in the UK.

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    sounds like WG to me2. I had 2 false negative nose biosies so don't trust yours. how are your labs ? anca ? do you have a saddle nose ? I think it is our "stamp", at least for some of us...
    welcome to the forum.....
    Last edited by Alysia; 05-08-2014 at 05:08 PM.
    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.

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    Hi Alysia and Titus 3:2,thanks for your replies. I was told by Rheumatology a couple of days ago that none of the tests they have done indicate WG and there is no inflammation. The biopsy was in 2012 and was inconclusive, and bloods, x-rays and scans were all done well over 12 months ago, and I haven't had anymore since. I have applied for copies of all my medical notes etc as I don't have specific details about anca and such, and have asked for a second opinion. I am going to be very aggressive from now on as this has gone of far too long. With regards to saddle nose, my profile has definitely changed and is not straight anymore, and the front of my nose is now off-centre and bulbous, and not helped by rosacea either. I can't even go into my local supermarket anymore without someone making what they think is a 'witty' comment about how I look and my son has been very upset by the sniggering staff (I try to rise above it but one of these days!). I have compared past photos to how I look now, and boy, even I am shocked and pretty scared too if I'm honest, and my family have noticed the significant change. It's not 'my' nose anymore and the right side of my face doesn't look right either. My way of coping is to avoid looking in the mirror!!! Hopefully someone will be able to recommend a good ENT department in the UK and I can seek a second opinion. Thanks for your help.

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    Hi, Jo, I totally feel for you and I'm sorry you are dealing with the frustration of having all if these symptoms and illness and no definitive diagnosis. As others have said, your symptoms certainly sound like WG regardless of the label, and need to be treated either way. Has anyone put you on the medications to see if they will help? I'm glad you're going to insist on a second opinion. I don't know how the medical system works where you are (I'm in Canada), but you just need to find that one good doc who will listen and help! Hang in there... I'm still betwixt and between myself (some drs say I have. WG, others say atypical RA; they started the meds regardless and some symptoms have improved. I hope that happens for you sooner rather than later.) I'm new to the forum myself, and reading all of the stories and advice here I have realized even more that we have to advocate for ourselves and for timely treatment. Take care!

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    Quote Originally Posted by Joanne View Post
    Hi Alysia and Titus 3:2,thanks for your replies. I was told by Rheumatology a couple of days ago that none of the tests they have done indicate WG and there is no inflammation. The biopsy was in 2012 and was inconclusive, and bloods, x-rays and scans were all done well over 12 months ago, and I haven't had anymore since. I have applied for copies of all my medical notes etc as I don't have specific details about anca and such, and have asked for a second opinion. I am going to be very aggressive from now on as this has gone of far too long. With regards to saddle nose, my profile has definitely changed and is not straight anymore, and the front of my nose is now off-centre and bulbous, and not helped by rosacea either. I can't even go into my local supermarket anymore without someone making what they think is a 'witty' comment about how I look and my son has been very upset by the sniggering staff (I try to rise above it but one of these days!). I have compared past photos to how I look now, and boy, even I am shocked and pretty scared too if I'm honest, and my family have noticed the significant change. It's not 'my' nose anymore and the right side of my face doesn't look right either. My way of coping is to avoid looking in the mirror!!! Hopefully someone will be able to recommend a good ENT department in the UK and I can seek a second opinion. Thanks for your help.
    there are here some great friends from UK, who have good docs. maybe you should open a new thread, titled with a question about docs in uk, so you will not be lost in that thread.... still sounds like wg to me...
    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.

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