Update - eyes : Hi I had my results from the... - Behçet's UK

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Update - eyes

Hi

I had my results from the ophthalmology consultant this morning.

The VEP and Angiogram have all returned normal results. I have been referred to the Specialist Eye Unit at Birmingham Hospital.

I am not sure what they do, what they could do or what this means for me.

I was told that this must be neuro. Guessing it’s the NBD but then can anyone else shed any light on any of this? Anyone been to Birmingham or know what they do?

Thanks

C

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All the Centres of Excellence have an opthalmologist at clinic. Don't read too much into it. I had 3 eye exams and a CT scan but my eyes are stable for now. Hopefully they be able to join the Behcet's dots and give you the right medication. Good luck x

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Thanks LindsG59 - I have been to Birmingham coe before and had a bad experience there.

I wondered if the eye clinic is separate as the consultant mentioned today was specialised in vitreo retina??

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I’ve had damage to my optic nerve but no actual Vasculitis in my eye. My doctors have determined it must be neuro, but it doesn’t show up on MRI or lumbar puncture. But those tests usually take to happen and by that time everything is normal. Some of my doctors get that with Behcet’s it waxes and wanes with blood flow and others still feel it will show up on tests. I’m in process of being referred to the Cleveland Clinic with a doctor that specializes in CNS Vasculitis with an interest in Behcet’s particularly. I’m hopeful. But I totally get your predicament!!!!

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I think that Birmingham has a completely separate eye centre which is not part of the CoE. I have attended the Birmingham CoE and also had a bad experience there but it sounds like you will be attending the main Eye Centre. Hope you get a appointment soon - please keep us updated

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What was your experience there? Was it with ophthalmology?

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I didn't attend the eye clinic - My appointment was at the Centre of Excellence

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I had a bad experience in London. Can you share what happened? You can PM me if you wish.

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I was just extremely unimpressed and disappointed with the Consultant who oversees the Clinic - having been diagnosed in the early 90's, my visit to the Birmingham CoE was the first time I ever wrote a letter of complaint :-( I cancelled my follow-up appointment and would never return there

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Do you go to another Centre now? I had a bad experience too but it was in London

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Sorry to hear that - was it a similar experience? I don't attend any Centres now. My visit to Birmingham was a one off referral through my GP. I am very lucky that the Consultant Immunologist who initially diagnosed me is still in practice (but private!) so in the main, I manage the condition myself and go to him for any advice or consultation every few years :-)

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Yes it was. I was pretty much made and to be honest told that I didn’t have the condition. But that was much earlier in the development of the condition. I also didn’t return but have never been invited back only hearing from them a month or so ago to say a whole list of untruths about treatment since that date (6 years ago) showing complete lack of knowledge. Was infuriating. I tend to self manage too, except at times like this when I really need the support.

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Yes it was very similar to you. I don’t k is where to turn now since they hold all the funding

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Although GP receive additional funds for us as we have rare disorders if you can call this that.

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Did you get a diagnosis elsewhere

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Yes through my consultant - I saw him privately then through NHS which has been lucky in the most part.

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Hi Papapickle

That is positive and brilliant they are not delaying in referring you to the eye hospital.

It is highly likely to be the NHS Birmingham and Midland Eye hospital, this is a specialist eye hospital, not the BD CofE, the centre is the 2nd largest in Europe. They also provide treatments for rare conditions not available elsewhere in the UK.

You can find out more from the website, and details on location, parking etc

bmec.swbh.nhs.uk/about-us/h...

nhs.uk/Services/clinics/Ove...

Take care, Gillian

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Remind me what your symptoms are?

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Sudden vision changes with blurring and unable to focus properly, dull ache behind eyes and light sensitive.

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Sounds like inflammation at back of eye but good the angiogram is clear as it means it hasn’t done any damage.

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Is that all it would show? They couldn’t see any inflammation on the ultrasound scan or manual dilation?

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Have you had a retinal angiogram. It is a test where you have due injected and loads of images taken to see if there is problems at the back of the eye.

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Yes I have. That was the most recent.

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Are you in London?

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I wonder you know whether as this condition hits areas without warning perhaps mine is my eyes.

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If you are on treatment it should prevent it getting worse.

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Unfortunately not. I have been left hanging.

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Hopefully things will settle down for now as back of eye is ok. This angiogram is horrid. The bright light bleached my photoreceptors and I had problems with colours and after images after the test.

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Hope so. Like you say horrible exam - I need to be able to find a good round it to get back to work.

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I’m sorry. That helpless feeling is the worst! It feels lonely.

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