North east specialist Wegeners/GPA??

[Tinkytink]

I feel like I keep bobbing in and out of this forum looking for answers to health problems for myself, my sister and my son who have very similar symptoms at different stages of progression. My sis is now due to see Dr Lordon at Newcastle as she has pronounced lung involvement so may yet get a diagnosis of vasculitis. I am still plagued by chronic sinus problems but with a low level c anca 1:40 the idea of Wegeners was dismissed a year ago. My son is really quite ill with a whole raft of awful symptoms and being seen by various depts at different hospitals for each. Our Mum died of undiagnosed Wegeners despite losing an eye and a lung in the years preceding her death.

My sis and I attended the Vasculitis patient symposium last weeken...fabulous info...and its clear that diagnosis is extremely tricky, and that early diagnosis is key...which is even more tricky!

Does anyone know of a good and discerning Doctor in the North East area or do we need to see David Jayne to get help up here?

[Suzym2u Moderator Vasculitis UK]

Dr Lordon has a special interest in lung Involvement in Vasculitis . We were talking to him yesterday at the Vasculitis 2015 Medical Conference. If you send John a few details [e-mail] he will try and help with some more information.

Susan

[Haggiss]

Hi,

I have Wegners Granulamotosis diagnosed over 6 years ago. I live in Co. Durham, I also have a friend who has the same disease. I get looked after by Professor Kumar at the University of Durham hospital. My friend is under the care of Professor John D IsaacsProfessor of Clinical Rheumatology and Consultant Rheumatologist at the RVI.

Hope this helps.

Thanks

[Alpsy]

Hi that's me Haggis is talking about. I'm at the Freeman under great Consultants one u hav mentioned Dr. Lordon ( lovely guy and fantastic Consultant! ), another one as Haggis has mentioned Prof Issacs who leads a great team of Rheumys again he is a great Professer and a very nice man! I also hav an ENT consultant Mr. Carrie who diagnosed me along with another ENT Consultant. Again I cannot fault these people fantastic! I hav 2 more at the RVI that I c only once a year my Hormone Co sultans due to me having Puturity involvement and my Eye consultant and the again r fantastic people! As u can c I think the key is to having a few Doctors on board as the specialise in things that Wegners can damage or they can c the signs. Dr Lordon will defo sort u and get more docs on board if u need them! He's a lovely guy I have a lot of time for him as he really cares! Hope u can understand him as he talks fast an has an Irish accent. Gud luk anyway hope u find a diagnosis soon xxx

[Tinkytink]

Thank you all for that info.My sister saw Dr Lordon yesterday and he was most helpful. She is having biopsies done shorqtly but has already started on all the meds so its looking hopeful that she will soon be sorted. I Put my sons symptoms into symptom checker...havent done that before despite him being ill for years as they always seem to over dramatise things...and the top diagnosis it offered was Wegeners Granuloma. So that and the excellent i fo at last weeks conference helped my have the confidence to pick up the fight once more and try to get him seen by a specialist who understands WG. I am going to ask if he can be referred to the docs above. As for me, I am using a steroid nose spray and hoping to keep things at bay until my sis and son are sorted...much more important as they are much iller than me. Suzym2u...Im assuming these are the same docs John would have recommended? As I said to John at the conference, we are all so grateful for the work that John , yourself and others do to help us have the confidence to seek answers and make sense of things. Will keep you posted about how it turns out, PS I sent our details to Richard Watts who spoke about the human genome testing trial.He gave me his email address so we could take part with there being such a strong family link, my mother having died of Wegeners many years ago.

[Suzym2u Moderator Vasculitis UK]

I will show John your post Tinkytink, we only arrived home from London last night, from the Medical Conference. Dr Lordon spoke to John on many occasions at the conference. Please do keep us posted

Best wishes

Susan

[Tinkytink in reply to Suzym2u]

Hi, since the last post, I woke up with loud noise and buzžing in ears, as well as having intermittent double vision. waited 3 days and then decided as it wasnt abating, to see doc. had my eyes tested at optician, sight is fine...but says so ething must be intermittently blocking flow of blood to eyes to cause this...does anyone else have symptoms like this? doc has now referred me to ENT again...this time at Freeman but the waiting list is so long I have to wait til mid June just to book an appt, and then the wait is 79 days...this should be fun with the loud buzzing noise and blurred vision added to the general nose problems Ive had for three years. Doc did say my nose looks very inflamed right at back?