New Member

[Joanne]

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.

[Dirty Don]

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!

[windchime]

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. :hug2:

[annekat]

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.

[Jaypfei]

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.

[Joanne]

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.

[Alysia]

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..... :hug2:

[Joanne]

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.

[LisaT]

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!

[Alysia]

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...

[Fran]

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

[Joanne]

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

[Titus3:2]

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.

[Joanne]

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).

[Alysia]

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

[Joanne]

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.

[annekat]

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.

[Alysia]

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.

[keegan55]

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

[Joanne]

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!