Hello!

Hello,

Yesterday i went to the doctor and he told me that i have this syndrome. Please im new to all this and i dont know what to do or say or think. I first had some spots on my legs but i thought that it was something normal. Then one day i woke up and my vision was blurry and i see these black spots everywhere from my left eye. I dont know how worse it can gets or if there is a medication that can help me... if you know please help me. Thank you!

24 Replies

oldestnewest
  • Did he diagnose you then and there or was this a lengthy process? What about ulcers? Oral? Genital? Treatment so varied that it depends on what other symptoms you have.

  • I do have ulcers in my mouth but no genital and something like a rush in my legs. The problem is that i have a blurry vision that it can get worst any time. And...the doctor wants me to do more tests before he gives me any treatment.

  • I don't wish to alarm you but you need to see an ophthalmologist at the hospital immediately. I speak from experience.

  • I went to an ophthalmologist but he said that is too early to give me any treatment. And even if there is problem with my eye... he says that is better to leave it as it is and see first whatbis wrong. But for example i had an appointment 2 days ago and my next appointment is in july. I dont understand why he can't do something immediately. Thats why i want to have a 2nd opinion...and for my eye and for the symptoms. I just dont know where to go, what to say.

  • You don't say where you live but my ophthalmologist is a Mr Patel, based at Derby Royal. Wonderful man. I know it isn't what everyone can afford but if you can see someone sooner private. July too far away.

  • Is it a private hospital?? And is it very expensive?

  • No it is NHS. You will need to get referred by your GP. Eye problems can't wait. Have they given you any meds or eye drops?

  • And do i have to ask my doctor to refer me to another doctor in order to book an appointment?? I dont know how the system works. The point is that i went a month ago to the royal hospital and the doctor told me thatis something like eye inflation and he told me to do some test bloods in order to see if there is something more serious that cause the problem. I did the test blood and he told me that he will see me again after a month, and he gave me no drops or anything else. After a month(2 days ago) i went again. The tests were all negative except one that i dont remember the name was positive. He aksed me if i have other symptoms such any rash or ulcers in the mounth. I said yes and then he told my that my symptoms are similar to this syndrome's symptoms. But he refused to give me any treatment for my eye again. He said that i can give anything yet and we have to examine that further. And he booked me an appointment for july so a rheumatologist can see me. But im really scared for my eye and i dont understand why they dont take that seriously. Thats why i want a second opinion...because he is not actually helping me! And i want to go to other doctors but i dont know how these references things work. And can i ask them to give me the results of my blood tests so i can show them to someone else?

    Thank you, anyway!

  • The way the system works is you get referred by your GP. Then you get sent an appointment through to see a specialist. Depending where you are/what you are diagnosed with. This appointment can be a few weeks. You can now opt to see a consultant privately to shorten the length of time you are seen. After which you can drop back into the NHS for further consultation/treatment. My husband had bladder cancer a few years ago and we were told we had to move fast. On the NHS the wait for a consultant was 6 weeks. We couldn't wait that long so we paid to see the consultant private. After the treatment was decided he was treated on the NHS and they have been brilliant. But there is a delay in the NHS in the step from GP to consultant. Hope this explains.

    If you have read this before I'm sorry. Ring your GP in the morning and ask to be referred immediately

  • Thank you very much!

  • You're more than welcome! There is a test for Behcets but a negative test doesn't mean you haven't got it. Mine was negative. If you have any problems or questions please feel free to ask. Good luck and I would love to know how you get on.

  • You don't say where you live? Birmingham has a centre of excellence, but any ophthalmology dept will look in your eyes and see you have inflammation. Even pitch up at A & E.

  • I went to the royal hospital in liverpool...(eye unit) the doctor told me that my symptoms are very common to this syndrome's symptoms. Do yourecommend me to go to Birmingham?? Because the doctor here just want me to do more and more tests and he book an appointment after the other one without doing actually something. Do you know any good hospital in London or anywhere else that i can go. I dont know how the health system work here because im not from UK.

    Th

  • Liverpool good. I just don't want to scare you but I was only given a definite Behcets diagnosis 12 months ago. Long story short after nearly 20 years of symptoms I got a retinal vein occlusion in my right eye. The first symptoms I had was floaters/fogginess. However this can also be inflammation of the front of the eye - uveitis - which I also had a few years back before Behcets was ever mentioned. That was cleared with eye drops. However this time, because I wasn't seen immediately I have limited sight in my right eye. My worry was I would also lose sight in my left but I was put on steroids to rid the inflammation and Azathioprine for ever to control inflammation in my system. !2 months on and no sign of inflammation in my eyes. I would insist you see an ophthalmologist asap. I am not slagging off the doctors you see, but I just feel if I had been seen sooner, maybe things would have been a little different. It is a very rare disease we have and I am always careful not to preach to any medic I see, but I have had to be gently forceful in some situations. Let us know how you get on.

  • The point is that the doctor i went to is an ophthalmologist.. and he still does not to anything to help me. Thats why i want a second opinion.. but i do not know where to go. If there is another hospital in Birmingham as u mentioned or London i would visited...anyway thank you for your advices!

  • See if you can get seen in Derby. The GP I saw has now gone to work in the ophthalmology unit in Derby. Anyone can get eye inflammation, but if it is Behcets it is the immune system attacking healthy tissue, so even if it is cured once, there is every chance it will come back. I tested negative for behcets, but it was decided to treat me as such anyway. I have been very lucky, so I just want to try to save you valuable time.

  • I have just re-read your post and the advice to leave it and see what happens is the biggest load of c*** I have ever heard.......

  • You don't say if this is a doctors diagnosis or if you have seen any specialists. I would suggest you see an ophthalmologist NOT an optician. Get seen at the hospital immediately if your eyes are effected. I had the same symptoms. I was put on 150mg of Azathioprine daily, and it has eliminated eye inflammation immediately. Behcets is an auto-immune disease and need to be treated. Keep us posted and good luck.

  • The way the system works is you get referred by your GP. Then you get sent an appointment through to see a specialist. Depending where you are/what you are diagnosed with. This appointment can be a few weeks. You can now opt to see a consultant privately to shorten the length of time you are seen. After which you can drop back into the NHS for further consultation/treatment. My husband had bladder cancer a few years ago and we were told we had to move fast. On the NHS the wait for a consultant was 6 weeks. We couldn't wait that long so we paid to see the consultant private. After the treatment was decided he was treated on the NHS and they have been brilliant. But there is a delay in the NHS in the step from GP to consultant. Hope this explains.

  • Hi, you need to go to the A and E of an eye hospital near to you. Brighton eye hospital is very good. I had some eye problems last year (I already had suspected behcet's but it was the first time I'd had any eye involvement). I actually went to an optician (Specsavers) and asked for an eye test as my vision was painful and I knew something was wrong. They could immediately see inflammation and referred me immediately to the eye hospital nearby. I went there the same day, (the A and E department) waited for 4 hours, saw an ophthalmologist and was given the appropriate drops for uveitis. If it is uveitis, it needs to be treated asap.

  • Hello,

    Yeah...this is what they said.. left intermediate uveitis. But they said that it is not threatening my vision. .and thats why they recommended me not to take stereoids yet..how is your eye now??

  • If it is uveitis, you do need to use the steroid eye drops. I would have thought they would have prescribed this. Did they not? My eyes are fine now. I had to use the drops along with other drops for 2 months to clear it up.

  • Are there any side effects of these stereoids eye drops??

  • Well, you do have to take them alongside other drops (mydriatic drops) that are dilating drops otherwise you can have serious side effects.

You may also like...