Good UK ENT Hospital/Consultant

Hi, my name is Joanne and I'm a new member from the UK. Please bare with me as concentration not always so good, and still finding my way around the forum as it were! I was diagnosed with WG in February by ENT but told by Rheumatology last Tuesday that I don't have it, so I'm seeking a second opinion and would really appreciate it if any UK members can suggest a good ENT consultant/hospital? I am in the North West area of the UK, but would travel if necessary, as my health has been deteriorating for many years now, and I really need some answers and treatment soon. Thanks.

Hi Joanne, I forgot to mention that as well as the Vasculitis UK- Healthunlocked forum, there is also the Vasculitis Trust UK, where there is a helpline and I am pretty sure that they could put you in touch with doctors and consultants in your area as they seem to be the main 'go to' people for help. They certainly helped me 16 years ago when I was pretty desperate.
I still like this forum best though - plenty of good advice and there is always Alycia's funnies to look forward to !! :wink1:

Hope you get help soon.

Fran

Hi Joanne,

I agree with Fran. Vasculitis UK and John and Sarah Mills will gladly provide the info you are looking for. I am living down in the S.E of the UK, i.e Essex and am fortunate to come under the watchful eyes of Addenbrookes. There are however, other centre of excellence in the UK and its just a case of research and getting a referral. Things are not as bad as they were 6 years ago when I was first DX but please PM me if I can be of any further assistance. Good Luck and let us know how you get one!!

Hi Fran and Geoff, thanks for much for your invaluable info. Will let you know how I get on after I've done more research. Going to take my time and get it right this time!
Joanne

My wife was looked after by Mr Welch and Dr Higgins at the Freeman Hospital in Newcastle upon Tyne. She was diagnosed in 2005 and after Rituximab and a couple of flares she's been doing well.

Hi Barry, thanks for your post. It's really heartening to hear that your wife has been doing well on the treatment. I have contacted John Mills at Vasculitis UK and I got an email back the same day, and he's going to help me get sorted so that's some good news. Thanks again.

That's great. Good luck!

Hello Joanne
I live in Worcestershire and was referred to Prof D'Cruz at St Thomas Hospital London
He is the best man in Europe & lectures world wide
I cannot recommend him highly enough : I feel confident he will help me get on top of this Weggie adventure
Good lick x


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Originally Posted by Joanne

Hi, my name is Joanne and I'm a new member from the UK. Please bare with me as concentration not always so good, and still finding my way around the forum as it were! I was diagnosed with WG in February by ENT but told by Rheumatology last Tuesday that I don't have it, so I'm seeking a second opinion and would really appreciate it if any UK members can suggest a good ENT consultant/hospital? I am in the North West area of the UK, but would travel if necessary, as my health has been deteriorating for many years now, and I really need some answers and treatment soon. Thanks.

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Good for you for getting a second opinion! I will be most interested in following what is going on with you. I too was mis-diagnosed with Wegeners. It has been ruled out by two other specialists. I would recommend that even if you find you do NOT have it, that you stay on this forum. I did because many of my problems are very similar and I get a lot of good diet advice, and also advice on managing my ongoing, somewhat mysterious, asthma/bronchitis/bronchiectasis/chronic nonallergic rhino-sinusitis. Not to mention these guys are so much fun to chat with.

I would be interested to hear your symptoms. Right now, I am exploring an IgG 2 deficiency as a possible cause of my problems, and am about to embark on long term antibiotics, followed possibly by sinus surgery. Let me know, and keep us informed of your progress. Good luck!!