I have a behchet sindrome. Doctors said because of this my eyes have no tears and they cant get wet, they dry. Artificial tears dont help.

[zlato34]

I have a behchet sindrome. Doctors said because of this my eyes have no tears and they cant get wet, they dry. I have a constant pain in my eyes on their backside and in my head. Doctros said i dont have inflammation in my eyes but i feel a constant pain, my vision is reduced. Pls if someone can give me an advise what i can do. Artificial tears dont help me and i have to insert them every 5 min. My email is [e-mail] Previous time i had inflammation and wounds in my mouth and...then i noticed i had coxaci virus infection antibodies, now i checked i have a strong adinoviruses infection. Maybe everytime some virus infection unlockes behchet sindrome. I see darker with my eyes and like i have sand inside them its very difficult and painful.

[lesleyg]

Hi Zlato, hope someone comes up some advice for you.

I get quite a bit of pain in my eyes and am checked regularly by the ophthalmology department of a teaching hospital (so far no real damage).

I have quite a few appointments with different specialists in the hospital and it means a 2 hour trip each way approximately once a month (for a long time it was nearly every week). I found that it was much better going through a hospital, rather than just going to one doctor and getting their opinion. In a hospital (even as an outpatient) the doctors can consult with each other for ideas)

It is very different in each country however if I was in that state and went up to a Sydney to emergency, something would be done about it (not necessarily so iif I went to a smaller hospital).

Are you living anywhere near a teaching hospital?

Lesley

[Hidden]

HI, I think there are several parts to your question, but the overriding issue is that you MUST have your eyes checked regularly and this should be by an eye doctor, if possible one who has knowledge and experience of BD. Not knowing where you are from or what type of doctor you are seing makes it a bit difficult to respond with useful advice, but if it is at all possible, get your eyes checked by a specialist as soon as you can. Is this something you could go to a hospital accident and emergency unit with? You could get a referral from there. Or you could get one from an optician/opthalmologist. You can also email your question to the BD Society, who have a panel of experts who may be able to advise you. You won't get an answer from them straight away though.

Now, let's look at your problems :

Dry eyes - this is indeed a well known problem with BD, usually as a secondary condition and sometimes diagnosed as Sjogrens syndrome, depending on other symptoms. There are very many types of lubricant and it could take a while to find the one that suits you best - or a combination of several. There is also a procedure whereby punctal plugs are put into the tearducts that drain, so that any moisture in the eye does not run away immediately. Dryness can cause corneal erosion which affects vision.

The pain behind your eyes and your head could be something different, for example inflammation, (not actually in the eye) vascular, nervous system .. it really needs investigating and treating.

Adinovirous infections as far as I know, are not directly connected to BD. I am not a medical person so am talking only from experience. This infection can cause scarring which would also affect your vision. BD could make it worse or slow down recovery, but as I said earlier, I am not aware of it being responsible for the infection initially.

On the Society website there are information sheets about eyes, headaches, ulcers - which maybe something to do with the wounds in your mouth. If you could print off the ones that you recognise as being something you suffer from and show it to who is currently in charge of your medical care, or take to a hospital, this may help if whoever is treating you is not familiar with the disease.

However, someone has already told you there is no inflammation in your eye, and I assume you were tested or seem by someone who knows about adinovirus, so could you try and get some more help from whoever this is?

I would recommend that you give out any personal details, such as your email address, on a public forum, as anyone in the world can access it. You could perhaps ask people to send you a private message, which they can do by going to your account here.

Finally, as I said earlier I don't know where you are, so I don't know how much of this is relevant, but the Moorfields eye hospital in London is internationally recognised as being one of the best (if not THE best) and people are referred there from all over the world. Travel and costs and those kinds of details can usually be helped with - but don't take my word for that, it depends on circumstances and policy - you would have to find out. One thing I do know for sure is that they would look at every aspect of your eye problems and do their very best for you. Hopefully this is something you can get from wherever you are, now that you have a place to get knowledge and advice.

[Hidden]

CORRECTION:

I would recommend that you DO NOT give out any personal details, such as your email address, on a public forum, as anyone in the world can access it. You could perhaps ask people to send you a private message, which they can do by going to your account here.

[zlato34]

Hi, thank you for your kind answer and advice. Actually i went to a doctor (eye specialist) maybe more than 10 times. I was in a hospital for a week. ?he only answer i got is that i dont have tears and must use artificial ones. Almost for a month i`ve been suffering from a pain in my eyes (on top, back, inside), my sight is reduced, i see darker, dark spots, became very sensitive to the sun`s light. Last time doctor told me my blood vessels got bigger, inflammated, conjunctivitis. I took and continue to take cortizone, cortico-steroids. Doctors prescribed me eye drops against inflammation- it doesnt work. I cant stay on PC or watch TV. I feel i have sand in my eyes. I feel pain in my knees.

Till now i had from time to time only wounds in my mouth and on the penis. Now it affect? my eyes and felt very strong headache. I can not work like this. I need 100 % my sight.

I noticed it is somehow connected with my liver. If cholesterol is higher and trigliciriduses, if i dont sleep normally or if i am nervous i get Behchet troubles. So i will try again with a diet.

I will stop eating any food for a week or more . The wounds are like burn i suppose in my blood there is accid or al?aline element, maybe the liver doesnt work the right way. I get killos very quickly, something is wrong with the substance exchange. Anti-bodies for viruses stay too long in my blood and remain in the smallest blood vessels- well vascularised. The problem is the doctors here seems not to care too much. Everything is for money. Sometimes it is very difficult to ask them anything, or they have a terrible behaviour. Is it a coincidence- high quantity of antibodies (Anti-adenovirus and anti CMV)? I can not use artificial tears all the time i need "my own". My work is connected with the sea i can not go to work for 6 months on- board with a box of artificial tears. Is there any way my eyes to produce the normal way tears??? Shall i try with herbs, chinese medicine, acupuncture? I am still 33 years old, i cant live with this. I live in the eastern europe, in Bulgaria. Thank you for your answer. I am not sure i can afford now going to a hospital in London. And things change in me very quickly maybe in 3 weeks it will worsens.

[Hidden]

How I wish I could help you, I am not medically trained and am only speaking from experience. I don't know how the medical system works in your country. If you were able to have punctal plugs in your tear ducts that could possibly help your eyes to retain moisture, but it seems that you are not making progress with your doctors. I don't know if your eye doctors are specialists in the way BD affects the eyes, you really do need to be seeing someone like this. If you were on a more suitable eye lubricant you may not need to take so much with you and the containers could be much smaller. Some come in tiny tubes which last for quite a while even when applying frequently. What you are calling wounds on your penis and in your mouth I think you might mean ulcers, a typical symptom of BD. You really need to be seeing a specialist in BD who can oversee all of your symptoms, as well as seeing a BD eye speciaist as there are many treatments that can help - if they are available to you.

Conjuntivitis, the viral kind, can cause scarring and affect vision but is not caused by BD as far as I know.

Personally I would not advise not eating for a week, I don't see how that would help your health overall. Nor would I personally recommend alternative medicine because I am not medically trained and I do not know you.

You are clearly very knowlegable and intelligent, the only advice I can really give you apart from what I said already is to see if the society can help you in any way - I am not sure if they can, but I do know they will certainly try.

[Littlemermaid]

Zlato, dryeyezone.com/ This forum is helping me very much with dry eye surface problems - there are good solutions as well as eyedrops, like punctal plugs (as above), wraparound moisture chamber glasses, eye masks and taping for night, which eye drops make things better/worse due to eye sensitivity, and information and experience on bandage contact lenses. There is a very good talk group dryeyezone.com/talk/forum.php and much experience on managing aqueous deficient tear film as in Sjogrens. Best wishes to you for help with this. Ophthalmology is developing very fast.