A last maybe some answers!!!!!!!

[jamie]

Hello to you all,
My names Jamie im 35 and live in london in the uk and was diagnosed wth Wg 2 years ago.Although I have WG and all the problems that go with it,im told I have a very rare form that affects my major arteries and major organs resulting in a brain haemorrage and a burst ayorta(not sure if thats the correct spelling but its the main artery from your heart).This disease has so far mangaed to kill me 3 times but thanks to a combinaton of extreme good fortune and skill of very talented surgeons im still here.I have been on cylcophosphamide and have now switched to methotrexate and with the prednisolone everything seems to be settling down and my consultant is happy with my progress.
The main problem I have is that I know no one else who has WG and although my consultant is a WG specialist because of the form i have he very rarely has any answers for the strange things my body keeps doing.
To have found your site and to read some of the things that are going on with others on this site is a massive sense of hope to me as maybe i will be able to get some answers.
Already I have learnt that the random joint pains and the swelling of my eye is not specific to me and is happening to others(I mean that in the nicest possible way).
I come into very regular contact with consultants,doctors and surgeons and feel that to them i am a source of information and not the other way round which is how i beleive it should be.Usully when i turn up and say smething new is happening with my WG they generally look pleased and rush off to get coleagues to listen and make notes but i get no answers and am often left feeling like a guinea pig.
I wont bombard you all with the questions i have now butj ust wanted to post this and say thanks for letting me know that i am notalone in whats happening to me and also my family.

[Luce]

Hi Jamie

I'm 25 and live in Dorset, I was diagnosed about 7 months ago with WG. I had lots of blobs (granulomas) on my lungs and lost about 40% of kidney function.
I'm really sorry to hear of the problems you have regarding brain haemorraging and the burst aeorta - I've not come across those symptoms before.

The drugs you mention are typical of those used to treat WG and I can totally relate to be treated like a guinea pig and not getting much information from medical staff.

As for discussing weird things your body does, boy have you come to the right place! Please ask away, there are members here who are in varying stages of the disease and I can guarantee at least one member has experienced some of the weird things you talk about.

We're a friendly lot, even if some of us share a rather warped sense of humour at times.

I hope you find some of the answers you are looking for here.

XxX

[Jack]

Hi Jamie, welcome to the forum. Sounds like you have an interesting variant going on there, although you are not alone, I have heard of it before.

Your consultant's reaction to you as a subject for research is perfectly normal! I attend a special vasculitis clinic at a large teaching hospital, they know their stuff, but there is so much more to know. Treatment tends to be the result of a combination of past experience, research and "I wonder what would happen if we........?"

Hope they soon get you into some stage of remission and that you don't suffer too much damage in the meantime.

[Sangye]

Hi Jamie,
Welcome! Your relief at finding this group is familiar to us all. Most of us have never met another Weggie. And as Luce said, this is the place to discuss the Weird and Bizarre.

I've gotten so much help from others here. I've also learned a lot about what happened to me in the past (eg, why I didn't do well tapering the pred as fast as I did). It's nice to finally understand. Most docs--even the Wegs specialists-- just look at us with our long lists of symptoms and shrug, "I dunno."

I look forward to getting to know you.

[Doug]

Hello Jamie-

Welcome to the neighborhood! The more the merrier! You might even find some fellow English weggies close or motivated enough to make contact, in person, with you. It amazes me that weggies from urban areas don't seem any more likely to know another weggie than those of us in more rural places.

As for doctors, learn as much as you can from us and other internet sources, and become the person asking the questions. Show them you are an active member of the team working to bring you to some new normal. If nothing else, they appreciate it when you can carry on a discussion with them and they don't have to take their knowledge and dumb it down for you. You'll be saving them time, you know. I have yet to meet a doctor who didn't like that!

[Derek]

Hello to you all,
My names Jamie im 35 and live in london in the uk and was diagnosed wth Wg 2 years ago.Although I have WG and all the problems that go with it,im told I have a very rare form that affects my major arteries and major organs resulting in a brain haemorrage and a burst ayorta(not sure if thats the correct spelling but its the main artery from your heart).This disease has so far mangaed to kill me 3 times but thanks to a combinaton of extreme good fortune and skill of very talented surgeons im still here.I have been on cylcophosphamide and have now switched to methotrexate and with the prednisolone everything seems to be settling down and my consultant is happy with my progress.
The main problem I have is that I know no one else who has WG and although my consultant is a WG specialist because of the form i have he very rarely has any answers for the strange things my body keeps doing.
To have found your site and to read some of the things that are going on with others on this site is a massive sense of hope to me as maybe i will be able to get some answers.
Already I have learnt that the random joint pains and the swelling of my eye is not specific to me and is happening to others(I mean that in the nicest possible way).
I come into very regular contact with consultants,doctors and surgeons and feel that to them i am a source of information and not the other way round which is how i beleive it should be.Usully when i turn up and say smething new is happening with my WG they generally look pleased and rush off to get coleagues to listen and make notes but i get no answers and am often left feeling like a guinea pig.
I wont bombard you all with the questions i have now butj ust wanted to post this and say thanks for letting me know that i am notalone in whats happening to me and also my family.

Hi Jamie
Glad you found us. I have found the site very helpful with firsthand knowledge from fellow sufferers. As far as I am aware I have not got the complications you have described with the aorta but I hope you get that sorted soon. I was diagnosed with WG in 1989 and I found that most doctors, probably because they did not know, treated you like a mushroom, (Keep you in the dark and feed you full of ****). I now make every effort to know as much as I can about my illness and I have found it better to be assertive about what you want with the doctors.

Hope you get on OK.

Derek

[coffeelover]

Welcome Jamie,

What this site did for me was to feed my mental state. I finally realized I wasn't "crazy". It is such a relief to know others have what you have. I am sorry you are struggling with the symtoms you have....but we are glad you found us.
LIsa Coffeelover

[jola57]

Hi Jamie and welcome. As Lisa said, its a wonderful site for all of us to share and compare symptoms and treatments and to know that we are not alone. How wonderful it feels to know that my symptoms are not bizzare and someone has had them just like me. Glad you are here.