I would like to know if anyone here (with Behcet's) has double vision.

[Shalom-yall]

I have had double vision for over 6 years and it keeps getting worse. I wear prism glasses which help to some degree, but I have to keep getting new prescriptions as the diplopia keeps progressing.

I have been thoroughly examined by four (supposedly knowledgeable) Ophthalmologists and have gotten four different diagnoses. One of the doctors told me I had something called Convergence Excess Esotropia which has to do with the eye muscles. He told me it could absolutely be a symptom of Behcet's. However, the last doctor I went to said I did NOT have that or any of the other diagnoses from the other doctors. He also said Convergence Excess is not a symptom of Behcet's.

He did a very thorough exam and said I have nerve damage in my left eye, and it probably is due to Behcet's. I just has a brain scan done and will know the results at the end of the month. I may have to have surgery. I am extremely frustrated since four doctors have diagnosed me differently, so I don't who to believe. I am so afraid I will go blind as my vision is also fading. Just wondering if anyone else has double vision.

[sian34]

I have convergance problems with my eyes and wear strong prism glasses. Doing eye exercises helps and I am cared for in this respect by an othoptist ( an eye physio). Doing the eye exercises has stopped the problem getting worse. I have been told in past it is not behcet related but who knows. I am going to ask prof Stamford at behcet centre of excellence when I see him. Just had uevitis so am due to see him on my next visit to centre.

Got some kind of vasculitis problem in my head at the moment so am on high dose steroids. The problem is also affecting my inner ear and balance.

[Shalom-yall in reply to sian34]

The first two docs that said I have convergance (each diagnoses was a different type) gave me exercises to do but it didn't help at all. As for convergance being a symptom of Behcet's, in doing some research I have read that it certainly can be. The second doc I saw said it absolutely could be. He was supposed to be one of the top Optho docs in our area and was very familiar with eye problems of Behcet's patience.

But this last doc insists I do NOT have it at all. He specializes in double vision problems. He said I have some kind of nerve damage. But please leave a reply here when you find out what the prof at Stamford says about convergance. I would like to know. Good luck on your next visit!

[magician in reply to sian34]

Please tell me how your vasculitis in the head got diagnosed. I am interested because i also have a balance problem. I have had previous balance problems that were attributed to displaced ear cristal. But this time around, it feels rather different and it has been ongoing since mid 2013.

Thanks!

[Motherof4]

Hi, my daughter has double vision , started beginning of last year and she too now has glasses and on her third prescription . Hers started from a massive headache that come from nowhere and she lost her hearing at the same time. Luckily the gearing came back but occasional a headache - since been told migrane will set both off again. The DV is always there she has just ( only 8) goy use to it.

[andreafm]

I share your frustration with this as I have also been under various Consultants, all of whom have given me a different diagnosis....including Myasthenia Gravis which weakens muscles, including the eyes.

There are 2 types of double vision one is that when you cover one eye the double vision goes away and this is generally muscular. The other which is in one eye called monocular and more problematic.....unfortunately I have both. My consultants too have said this is to do with Behects and also nothing to do with Behects......so cannot help you in terms of whether it is a behcets symptom or not.

My Behects symptoms have gone neurological now and my brainstem has been affected and this can affect vision, amongst many other things. My neurologist seems to think some my vision issues have come from the Brainstem inflammation I am suffering. In this sense it is connected to behects in the brain, but not an actual problem within the eyes, themselves..

Recently it suddenly also became noticable that I had cattarachs on both eyes....probably because of the steroids I am taking. Now waiting to hear if an operation on the catterachs is recommended.

We are all different and eye conditions do seem to take a really long time to get to the bottom of and are very frightening.

Hope the MRI results are o.k

[Shalom-yall in reply to andreafm]

Well, you have given me more info than the doctors! I wasn't aware of the different types of diplopia. The last doctor said my problem was in the left eye, but he said I also have a mild case of convergence in both eyes.

As for the MRI, they did it to see if I have a brain tumor. Thankfully I don't, but I still didn't get any more info on the real cause of the double vision or the rapid loss of vision.

The doc suggested I have surgery to repair the nerve and it might correct it, or at least make it better. But I choose not to. I'll just keep getting new prescription glasses as I need them.

Are any of you aware of what a stereogram is? Its an image with a series of incorporated duplicated images in it that if you view it in a certain way you can see a 3D picture. The 3D image literally POPS out at you. For some people it takes a long time to be able to see the 3D image, and some never see it. But most of us with double vision can see it immediately. I have always been able to. The reason is because if you cross your eyes just a fraction you will see it. Fortunately I don't have double vision up close and I create stereograms and I love them, so I guess you can find something positive in everything!

I was told by one doctor that a lot of people with (certain types of) diplopia could have had it since birth, but children learn to compensate for it.

Also, since I was a child I found that forcibly crossing my eyes felt very comfortable and soothing. Still does. Strange.

But as Motherof4 said of her 8 year old daughter, you get used to it. It's so unfortunate that someone so young has to deal with this.

Hope you don't have to have surgery for cataracts, but if you do it might be a blessing. My mother had the surgery and said she could see better than she had since she was young! Best of luck to you!