I think I might be quite poorly: As you know I... - Behçet's UK

Behçet's UK
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I think I might be quite poorly

As you know I had a sudden change of vision not caused by uveitis or vaculitis.

I had my evoked potential test today and during it I saw grey patches.

I don’t know if this is normal.

Also when the nurse tested my colour perception it was different in each eye.

Can anyone give any insight? I am freaking out.

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Really sorry but no advice but just wanted to say that I hope the medics involved in your care get to the bottom of what is happening as soon as possible. Please keep us updated x

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How awful for you! Anything that affects the eyes is worrying. Your doctors are looking for answers which must be a good thing. Chin up and (I know it's easy to say) try not to get too worked up. Let us know how you get on.

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Sorry, no advice.

I hope they find the reason for your sudden change of vision. I went from ok vision to almost blind literally overnight, so I understand how terrifying it is. My sudden change of vision was due to uveitis.

I also had the test of color perception - one eye has less luminosity than the other, but it did not really cause a problem for me.

I have done so many tests, but I do not recall doing ‘Evoked potential”. Perhaps I have done it, but did not know its name. How was the procedure?

Keep up your spirits!

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Hi

Procedure was ok. Made me feel sick as afterwards.

I had thought initially it was uveitis but this was ruled out along with the vaculitis aspect. So really concerning about current situation.

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Did you get any vision back??

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No it’s still not right. It hasn’t deteriorated further but I have umpires vision still. It’s slowly starting to improve I think - that or I am just getting used to it.

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Is it anterior or posterior? Is the retina affected?

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The ophthalmologist couldn’t see anything either posterior or anterior hence being sent for the tests.

It seemed that my symptoms and experience was flagging me big time and they are looking for lesions among other things.

I am concerned because there is no inflammation or vasculitis present so my understanding would be that this wouldn’t be a behcets thing. Which then worries me as to what it could be...

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Yes, so much better than expected. But the inflammation persists

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What level of predisone are you on? That can effect the eyes in crazy ways. I go blind if I am over 60mg for more then a week

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None......

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having had many years of eye problems, I would say that you need to be seeing a neuro ophthalmologist or they wont make connections or even commit themselves to a diagnosis.

Evokes potentials is usually done to exclude MS

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What's the difference between a neuro ophthalmologist and an ophthalmologist cops?

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They see patients with eye symptoms thought to be neurological in origin. They are familiar with the clinical signs of diseases such as NBD and MS and can help with identifying the correct condition.

Optic neuritis and positive evoked potentials are more likely to be found in MS. Hope this is helpful.

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Very helpful thanks cpops. I have a follow up appt on thurs so hoping results come back for then.

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Morning Papapickle

It is easy for me to say please don't let your mind run away with you because we all do this, the results from your test will be back soon and I am sure if needed they will do an MRI, or did you have an MRI before the evoked potential test, I know from your previous posts you mentioned this.

Do you think the hospital have been checking you for optic neuritis, optic neuritis has been reported very rarely as a manifestation of neuro Behcet’s disease, a few medical articles exist about the association to Behcet's, it might be why they carried out the evoked potential test. It appears steriods and other drugs are used to treat this condition in Behcet's. This condition looks like it happens quite quickly, treatment can in some cases repair itself, I realise the evoked potential test is carried out for MS but it is also used for other conditions and in your case everything will have to be considered to get to the bottom of why this has happened.

As well as playing a role in the diagnosis of MS, an evoked potential test can:

assess hearing or sight

detect lesions and tumors

detect nerve damage, such as to the optic nerve

assess brain activity in coma patients

diagnose and monitor diseases that damage nerves

Try not to worry, easy I know, try and do as much as you can to occupy your mind until your results are back and you know the way forward.

Big hugs and take care, Gillian

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I know nothing about evoked potential. But my colour perception has always been very different in each eye. I first noticed this as a child! It's getting more pronounced now as I have a cataract forming in the one eye that makes things yellowy. I am an artist so I wonder if I'll notice the yellow shift when I look back on my 'cataract period'. Hugs.

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