Hello from Melbourne Australia

**timbo vic aust** · 11-27-2009, 12:07 AM

Hi all i honestly dont know where to start , my name is Tim hayes i am 41 yrs old and am married with 5 kids my head is going a million miles an hour at the moment , i am sorry to seem if i am rambling on but i have so much to tell not only for everyone to understand where i come from but i hopefully will be able to answer a lot of other peoples questions as well so please stick with my story . i have just been diagnosed with w.g on the 5/11/09 a long road of ups and downs since the start of the year very bad symptoms but probably longer when i think back. just a quick run down of how it all started for me i have been crook as i said all year with what i thought was chronic hayfever / flu type illnesses .My doc put me on so many things to try to clear it up prednisolone was the only thing that even touched it i went to a ent specialist who took ct's of the sinuses and the dreaded scope through the nose who found my nose was so inflammed they could'nt even get the scope in by this stage everthing was so blocked up i could barely hear in my rh ear and was deaf in my lh ear i had chronic ringing in my ears many hearing tests pressure headaches i could'nt get rid they are the worst of worst and all the aches and pains in the whole body that went with it my eyes were popping out of my head through sinus blockage and watered all the time they found poloups were totally blocking my nose i couldnt breath through my nose at all for 6 mths . every time i even tried to blow my nose or even sneezed i had full on blood noses i finally got into hospital for sinus surgery 5/5/09 after a 5hr operation i thought you beauty it will be fixed, in the months to follow i was getting slowly worse again but now my nose was ulcerating and still bleeding all the time i was going through 3 to 4 hankercheifs a day. the surgeon said it was the worst sinus op he had ever done and had a lot of trouble with bleeding it was still restricted but at least i could breath through it slightly . it would ooze thick dark brown mucas all the time and when i got up first thing every morning it was like some one opened the flood gates it would run out eveywhere so more prednisolone and ent clinics one after another my surgeon looked on several occasions with the scope in the noseand said it looked really ugly in there and finally took blood tests. at my next ent clinic he said i have looked very closely at everything with all my colleages ( docs + profs ) on two occasions and we believe by all your results we are looking down the path of a disease called Wegeners . so off i went home reading up furiously on it all . By the time all this went on it was august they booked me in for an urgent nose biopsy . which i was really crook by this time by early september i was in intensive care respitory at monash medical centre with pnumonia . then thorassic got involved while i was in hospital for the week the only thing out of the ordinary was my legs felt very fatigued they were very sore and i had'nt done any real physical activity for months i thought you beauty now we will get to the bottom of this now and for all not just 2 + 3 weeks at a time like going through the outpatients clinics WRONG everthing ground to a halt they said they could'nt do any more testing for the wg becuase they could'nt get a clear picture while i had the pnumonia with the blood tests as well as the ct scans even though the usual traits with the bloods for wg were through the roof so out of hospital i kept bouncing between ent clinic and thorassic clinic until my last appointment at the ent clinic . which after a lot of jumping up and down that we were not getting anywhere ent said they could'nt make the call for WG they called in thorassic who said the same thing , they all thought it was but could not make the call either . They both said rheaumatology is the only dept who could finally diagnose and treat the disease Finally after a marathon meeting they called in Rheaumatology department and got me an urgent app for the next day after seeing the professor and after 4 days in a row of more tests they finally diagnosed WG on 5/11/09 i have all the usual involvment sinuses lungs and still awaiting the kidney involvement . but there was blood in the last urine test which prof says need to keep a close eye on the biggest killer for me at the moment is i am working full time still. maybe pushing myself a little too much cause i struggle to get out of bed to get to work on time most mornings . they are very understanding with it all and said any time i need just take it off and any appointments just go but my legs are getting worse by the day i worry that the rate my legs are getting worse at that i might end up on a frame or even a wheelchair temporarily till they come good again .that is really scary for me this is the most frustrating part for me because i am usually so active . i have had 1 dose of rituximab and go for another on the 4/12/09 i am on calcium, vitamin d daily also methotrexate 20mg a week + folic acid 50mg a week and for a month now i have been on 50mg daily of prednisolone . along with my other meds i am a walking chemist shop at the moment i also take ventolin, seretide 500/50 2 a day and spiriva for Bronchiectesis and enphysema . once again thank you for your patience and taking time to read my story and if there ia anything i can help anyone with please dont hesitate to ask if it was'nt for my wife + family i think i would have gone ga ga by now . look forward to chatting to you all and finally glad to contribute

**elephant** · 11-27-2009, 12:26 AM

HI Timbo vic Aust,
So glad you finally got diagnosed. Wow, you have alot on your plate! Working full time and taking care of your family and as you know Wegeners disease is a full time job! I had some of the same symptoms, but no weakness in my legs. Just swollen knees, wrist, arms and fingers. I don't know if it could be your prednisone or other medicine? What does your Rhuemy say about your leg weakness? I know there are people on this site who take Rituxban. That is a good drug. Just curious, why didn't they start with cytoxan?
Welcome to this wonderful site, you will get good support here and we are all here to help each other get thru this.

**Jack** · 11-27-2009, 12:38 AM

Hi Tim.

Sorry to hear you are having such a bad time, it sounds like your specialists have been reacting a bit too slowly on this one and should have jumped in at the first hint of a Wegener's diagnosis. All the time that it goes untreated, it is killing you.

Your story sounds very much like my own, but I suffered from renal failure before the ENT guys caught on to what the problem was and I ended up on dialysis and then with a transplant. Things only improved when I was treated by a unit with specialist knowledge of vasculitis conditions. The usual docs just don't have the knowledge required to treat the disease.

I was interested to read that you suffered from Bronchiectasis as I do too. It is not the usual lung condition associated with Wegeners and my pulminary consultant says that it must be unrelated, but I maintain that he is wrong and it is just another little known result of this awful disease.

**crackers** · 11-27-2009, 04:31 AM

timbo that's some story but i'm afraid an all too familiar one of docs treating symptoms individually and not collectively.you're on a long hard road mate,as we all are,but it sounds like you've got a supportive family around you which is so important.read through the other posts on here and you'll see you're not alone.we are always here for each other so welcome and come back soon.
john.

**Sangye** · 11-27-2009, 04:44 AM

Timbo,
Welcome to the group!

I'm glad they finally got you started on treatment. Not a minute too soon, it sounds like.

Regarding the weakness in your legs... Have they checked you for blood clots? They're somewhat common with Wegs, especially when it's very active. A simple leg ultrasound will tell them. Please ask for the test.

If they look at you like you're crazy:
1) Get used to it. Goes with having a weird rare disease that look different in every person
and
2) Tell them about the WECLOT study--famous study that showed Weggies are 23% more likely to develop blood clots than non-Weggies. Weggies are more likely to develop blood clots than people with Lupus, who have a known high risk of clots. I walked around with uncountable clots in both legs and lungs for 3 weeks while my docs ignored it.

I hope you keep posting.

**timbo vic aust** · 11-27-2009, 06:13 PM

thank you all for your support it is reeassuring to know i have a lot of new friends and from all around the world too

that i can come to for advice

**katwoman** · 11-28-2009, 01:50 PM

Welcome Tim, sorry to hear about another aussie with WG but nice to have 'another local' in the forum.

Like many of us I can totally relate to your symptoms and constant battle to
keep normality in your life, but it sounds like you have a great support group with your wife and family and I hope your work continues to be supportive - but don't over do it, I've learned when my body says 'stop i need to stop' listen to it!

Doug · 12-01-2009, 02:44 AM

Welcome to the site, Tim. What a story! We are strong on becoming your own best advocate on this site. Your's is a story of how, as Jack and John noted in particular, doctors can hurt you more than help you, though you finally got what you needed. Sangye's advice is very good, too. We do tend to be more blotclot prone. I would have thought you would have been hospitalized by now, rather than continue to work. That may be the difference between getting WG in your early forties and, like me, and getting it in your middle fifties.

**Sangye** · 12-01-2009, 04:29 AM

Originally Posted by Doug

I would have thought you would have been hospitalized by now, rather than continue to work. That may be the difference between getting WG in your early forties and, like me, and getting it in your middle fifties.

I was diagnosed at age 42. I've been hospitalized about 20 times since 2006, either for Wegs or its complications.

Another good theory goes up in smoke...