Originally Posted by
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.
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