I might have Wegeners or not...

[kcabrera3]

thanks to all for the answers,

I think I am a bit in shock.

. If the local rheumy seems to be stymied about what you have, perhaps a referral to Dr David Jayne at Addenbrooke’s Hospital in Cambridge would be appropriate.

It is a pickle. I was talking with my OH about going to the local rheumatologist and my husband thinks that is a waste of time because it is likely he will refers me to someone else. So, I am going to call hammersmith hospital that seems to have a nice team and it is not as far as cambridge but if something go wrong, Cambridge is the next step.

Thanks

[vickivee1961]

My first symptom was my eyes in 2016. Attributed to allergies. Then frequent lung issues, bloody urine. All attributed to something else. Finally diagnosed in January of this year after open lung biopsy. I agree with the replies above. I'd go straight to Rheumatologist.

[Pete]

Just to make sure you’re aware: Dr Jayne at Addenbrooke’s is a world class Vasculitis specialist. Several UK-based forum members see him.

[Alysia]

Hi Karina.
I live in Israel. Wg is rare here even more, and docs are ignorant. 2.5 years ago I suspected wg involvemt in my eyes (I had episcleritis). I was able to find an eye dr. Who just came back from London. She worked there for few years in Moorfields Eye Hospital (I guess you can find it easily) in a department for vasculitis. I think you need to try them.
Eyes involvememt is comon in wg and should be diagnosed and treated as fast as possible.