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Vasculitis UK
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Totally frustrated!!!!!!

Well four years down the line, I'm still battling to understand my condition. Totally fed up with people telling me what I can see and hear, they don't seem to want to listen to me. Yesterday I went to see my eye specialist who was too busy to see me so I was fobbed off with one of his team. I couldn't understand him and every time I asked him to repeat what he said he shouted, but I just needed him to look at me and speak more clearly . I have optic neuropathy and a macular hole in my right eye. He tells me I can see fine in my left eye, I can see into the distance but I can't see people walking towards me! He had a quick look in my eyes told me they will see me in six months, realistically that will be eight months and they will also do a field vision test, last one I had was last August. I'm really worried if my sight deteriorates much more it will also affect my hearing as I partially lip read. Sorry I only seem to come on hear to moan, but I need to vent my feelings somewhere.

Change of subject I'm looking for information about the meeting at the Norfolk and Norwich hospital in May, do you still have some places left?

7 Replies

You just turn up on the day follow this lady in for details vasculitis.org.uk/news/2017...

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Thank you.


Who is the lead for you vasculitis ? Do you have a specialist nurse you can talk to?


Dr Watts is the lead, but he is away on a sabbatical, no specialist nurse unfortunately.


I believe Dr Watts is back now.. maybe if you could talk to him


Thank you.


Dear Valwood

That's not strange at all to feel frustrated

I get very annoyed with a well meaning acquaintance who has excellent health. It plays hospital visitor with me

She pops into my home on her way. Ack from some other task like shopping usually at short notice

Tells me I should exercise ( she does Yoga Pilates and frantically Gardens)

As I am reducing steroid dose by 1 mg a month my adrenals are. Try slowly kicking back in. It sometimes the exhaustion is unbelievable

I have GCA and the best advice I've had from another friend who was diagnosed with Wengers in 2003

He said Its all very well for your friend to pontificate about what you should do. It she has healthy adrenal glands and just simply doesn't understand

Because many forms of vasculitis don't make you look 'poorly' folks with good health don't understand

My sight is. Dry precious to me too as life without it would be. Dry hard for me too so you are right to get upset about the seemingly dismissive attitude of the eye clinic

Good luck

Best Wishes



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