Gary,

I'm glad you found us. A lot of us in the UK will recognise the distress and frustration you are experiencing. There is lots of information on this site about the various types of uveitis and effective treatment. It does take time to begin to understand it though, but I think you've got the gist of it rather quickly!

You are receiving the standard UK treatment of steroid as initial treatment. I'm afraid I don't know how long it takes for oral steroid to have an effect, but I do know that my consultant expects to see an improvement at the six week point, if steroid has been injected into the eye or received through iv infusion.

A diagnosis of posterior uveitis and loss of vision should mean that local eye clinics make referral to a specialist. This does not always happen. Quite a number of us have asked for referral and a few have had to be assertive in order to get it.

Since you have private medical insurance, I think it's a good idea to use it. Most people report at least a six week wait for NHS referral appointments, although urgent cases should be seen quicker than this.

You will need a letter of referral which is written by either your eye clinic consultant or your GP. My own referral was made by the consultant in the local eye clinic, but others have done this through their GP. When referral is for a private consultation, most GPs are happy to write the letter.

There are a number of specialist uveitis clinics in the UK. I see Professor Murray in Birmingham and other members see Mr Ayliffe in London, Professor Dick in Bristol and Mr Jones in Manchester. There is also a specialist uveitis centre in Aberdeen.

From what you have written, I suspect that you do need specialist care and most of the specialists will transfer you from private care into their NHS uveitis clinic after your first private consultation. These specialists will all order diagnostic tests as needed and will start you on second line treatment if you need it. Even if you don't need a specialist looking after your eye, the consultation with one is worth it because you get your mind set at rest.

Black dots do settle and disappear when the inflammation is under control. I had spider webs which looked like a net curtain once and they disappeared as well. The big grey blobbly like floaters and misty wispy things tend to hang around and sometimes a vitrectomy is done and they get removed with the gel part of the eye.

I hope you begin to make your request for referral straight away and that you don't have too long a wait before a specialist answers your questions.

Lots of us have been in your shoes and it takes quite a lot of determination to get ourselves to specialists.
Please let us know how you get on.

Maxine.