Hope you all had a wonderful Christmas/New Year. I have WG/GPA and am currently suffering from strange sensation in left ear.

The only way to describe it is like putting a conch shell to that ear...a sort of muffled reverberation (sea waves) which is constant and makes me dizzy.Is it common in WG? Makes me feel 'unsafe to drive'. This is a not a new symptom but has returned with a vengeance 3 months ot thereabouts but getting worse. Been putting OTEX in ear in case it's wax but I am sure it is not that. It really is quite distracting. Thanks.

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My WG/GPA started out in my ear and caused a thickening of the tympanic membrane which in turn led to similar symptoms as yours. Over time it caused a degree of scar tissue in the middle ear which got no worse once the disease was under control. Since then a T tube was fitted to the ear which I'd become virtually deaf in after it was discovered there was a cystaline watery blood like fluid building up behind the membrane. The proceedure restored my hearing immediately and the act of ventilating the middle ear has been totally successful. The only problem now is that the tube has had to be temporarily removed as it had igrated across the ear drum over the 2 years it's been in. A new one will be fitted soon and all should be well again. In your case might an ENT consultant should be able to decide whether your problem is mechanical or nerve induced?

Healthy wishes.

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Hello Martin, I an on Cell-Cept and Prednisolone and have had numerous attacks of excruciating posterior scleritis but this 'muffleness' in my ear is in a way worse because it is making me dizzy and scared. I was going to cancel the next appt with Vascy Team because I had to wait 6 hours from my appointed appointment (because they forgot me) so I am not sure where to go from here. Also I don't feel I am being properly looked after.

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I'm afraid your case isn't unusual in as much as you have to bang the table when necessary. Sorry you're not getting anywhere. Time to ask to be seen elsewhere? David Jayne at Addenbrookes wil work with your own consultant and he's the best there is in my book.

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Oh thank you Martin, but as a consummate Nurse I am so not used to complaining. I think my best bet is to see a GP at my surgery and ask for help...think I am quite depressed. Thank You.x

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Hmmm.. I understand your position but afraid I've no faith in GPs despite educating mine as much as possible in the past. Fingers crossed you get some positive help soon. x

[DevonLottie]

Hi Sheila, just wanted to say I'm with Martin here. GPs know nothing about vasculitis - most will come across a patient maybe once in their working life! It's important to push for the best treatment - and best consultants - yourself and it is your right to be seen by them. I don't know whereabouts you live in the UK but there are superb facilities in Cambridge, Birmingham, Oxford and London and I'm sure that John and Sue (Vasculitis UK) will have more recommendations. Just to 'put my money where my mouth is' I live in South Devon and travelled to Oxford yesterday to see the vasculitis expert there! Good luck and hope they sort you out quickly. Charlotte

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Hi Charlotte, It's just that I got worked up by having to wait so long at the 'new' Clinic in Manchester but as I have said the lady Registrar was really lovely..(everybody else had gone home!) Whenever I went to Birmingham it was a 'special' Clinic for Vasculitis (Nurses were great but I had to see a different Doctor everytime) ..I've been hospitalised there 5 times and had excellent care and felt safe. But I can't keep asking friends to take me so I thought a move to M'chester would be better for me and them. Dr Vennings I believe is a very good experienced Vasculitis Consultant, that's why I asked to be transferred. It is just that I am feeling unwell with this ear prob..dizzy and blocked up and nose very red/sore and drippy (like me I suppose!) Hey-ho but thanks.x

[gsmith]

come on shiela, chin up,start making a fuss, dont sit meekly, ask if they forgot you, ask why so much pain in remission, i doubt you get an answer, but they may sit up and think, i told my rhumy about my painful,feet, wear shoes with soft insoles, and he told my gp i am feeling well in myself, sometimes i get that feeling of not knowing where to turn,but dont let them think they have got you beat.i got a real bad cold,with a cough that leavs me almost choking,antibiotics hardly seem touching it but, i WILL GET BETTER. georgia

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Thank you all so much for your understanding. I think I have over-reacted about the long wait at my 1st appt in Manchester, at least I was eventually seen and the Registrar was such a kind lady Doctor who was very apologetic. (I had been so worried about leaving my ill little dog on her own for so long) Anyway I have appt 10/01/12 so I will be honest about my ear prob/depression et al without boring whoever I see. Think I have got what Martin described because that's what happened behind my eye. Thanks again xx