New from South Wales, UK

[oaktreehill]

Hey Guys,

Finally after months of readings posts on here I have finally decided to create a post of my own!

To give my little story - I was diagnosed back in May 2010 after suddenly loosing my hearing 5 months before. They thought it was ear infections - how wrong were they!? Currently on 20mg Mtx per week and my daily 7.5mg of pred. Things are okay but its funny how wegs can affect you in so many different ways! Im.. dare I say it... "Limited Wegs" ! Only seems to affect me from the neck up!

Seems as though Wegener's has been in the local press a lot lately. Coming accross stories of people in my local area who have the disease and think they are alone. Apparently a lady who lives near to me has found 11 people with Wegs within a 5 mile radius of me! Perhaps there is someething in the water here in Wales !!

[alhartzler]

Welcome to the forum! Sorry to hear that you have this, and so many others in your area apparently. It does suggest some sort of an environmental cause, huh? I recently started posting as well. I too was diagnosed with "limited" wegeners. I now have migratory arthritis symptoms that have been fairly severe recently, causing a trip to the ER a couple of nights ago. I am about to seek treatment at a major center. This has been an overwhelming recommendation to me since introducing myself here on the site. Anyway, welcome again. You probably already know this is a valuable resource and support network.

[freakyschizogirl]

Hey oaktreehill. I am another weggie with neck up limited wegs although mine is in my sinuses.

Interesting to have so many weggies in a little area....

Anyways, welcome to the forum.

[elephant]

Welcome oaktree, I was told that I had limited only in the sinuses but it went to the lungs and started to inflame other area's in my body. Just keep a close eye on all your symptoms.
That is weird that so many people have it close by you.

[Sangye]

Hi Oaktreehill, nice to meet you. The high incidence of Wegs near you could be very useful info for researchers. It would be interesting to get a local newspaper to do a story on you and anyone else who'd volunteer. You might dig up other cases. Then you could talk to a researcher to see if they can hone in on any causative factors.

[oaktreehill]

Local papers have had a few stories in there recently about people with wegs. Not really sure if I want to broadcast myself through the papers though! It is very unuasual to see the articles coming up every now and again - you would have though the reporters would have made the connections between them by now! Thank you for the warm welcomes everyone!

[Sangye]

I wonder if there's some way to do it with your identity concealed. JanW is a journalist and would know. I only suggest it because it could save other lives. Some readers could "self-diagnose" the mysterious symptoms they've been plagued with, and others might prevent it altogether if the cause can be discovered (eg local chemical company spewing toxins into the air). If something can cause Wegs it can cause other AI diseases, too.

[Hammy8241]

Welcome Oaktreehill. Nearly enough of you to start your own rugby team!! I hope you have an opportunity to meet some of them and exchange experiences.

I see that you have got a lot hairier in your aviator - is this the water too? Or is it my memory

Would have thought that the local consultants would have reported a 'cluster' of WGies to the experts but you never know.

Now theres a thought. What do you call a collection of WG sufferers - Unlucky yes , but is there a term?

[gwenllian111]

Hey Guys,

Finally after months of readings posts on here I have finally decided to create a post of my own!

To give my little story - I was diagnosed back in May 2010 after suddenly loosing my hearing 5 months before. They thought it was ear infections - how wrong were they!? Currently on 20mg Mtx per week and my daily 7.5mg of pred. Things are okay but its funny how wegs can affect you in so many different ways! Im.. dare I say it... "Limited Wegs" ! Only seems to affect me from the neck up!

Seems as though Wegener's has been in the local press a lot lately. Coming accross stories of people in my local area who have the disease and think they are alone. Apparently a lady who lives near to me has found 11 people with Wegs within a 5 mile radius of me! Perhaps there is someething in the water here in Wales !!

Hi

Where abouts are you from? I'm from Cardiff. Are you seen at UHW?

I've not met anyone else with WG in person!

Gwen

[gwenllian111]

Local papers have had a few stories in there recently about people with wegs. Not really sure if I want to broadcast myself through the papers though! It is very unuasual to see the articles coming up every now and again - you would have though the reporters would have made the connections between them by now! Thank you for the warm welcomes everyone!

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Hi

What papers have you seen WG mentioned? I'd be interested to read them!