New to this...eeek

Hello all - two weeks ago I had vision problems and swiftly had diagnosis of inflammation in the back of the eye. I'm am due to start a course of steroids and immunosupressants on Friday. I've just turned 31 (male). The eye consultant is convinced it's Behcet's. Reading all the accounts does fill me with absolute dread.

-At 16 I had one bad case of ulcers in my throat

-Nothing for 13 years, I even remember thinking how odd it is that I get no mouth ulcers

-At 29 after working myself far too hard I got terrible tonsillitis, antibiotics worked a treat but I would get worse as soon as my course finished. 1 1/2 years ago during one of many bouts I also got a mouth full of ulcers.

-During this period I had an episode of extreme chest pain, I ended up in casualty and it went within 12 hours

-1 year ago at 30 years old I had my tonsils out and up until this point I felt cured.

I'm trying to prepare myself for the worst but understand that for formal diagnosis I may need more symptoms as I've never had genital or skin problems and two bouts of ulcers in my entire life.

I guess I could be at the proper start of my journey, I guess the eye thing has freaked me out big time. Has anyone been able to live a fairly good life with this conditions, has anyone seen their symptoms subside?

Many thanks

7 Replies

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  • Hi there...it can be frightening reading a lot of our posts and can say that some people do live reasonably good lives with Behcets and also go into what they call remission.

    It is common for forums about health conditions to have some of the more dramatic cases as their members and this Behcets group is similar in that sense. Those who are well and/or have their condition under good control tend not to come on the forums as much as those of us whose condition isn't under control or have been newly diagnosed.

    What I am trying to say is not everyone gets all of the symptoms that you read here and for some it can be pretty well managed. I have also read that males tend to have the eye inflammation more than females but females do also get inflammation.

    I take it you haven't as yet been diagnosed and so am wondering if you have been referred to any other Doctors for an assessment?

    I have attached some links to the Behcets Syndrome Society that outline the criteria for Behcets and a list of similar disorders as many Dr's have to count out other similar conditions first as there isn't an actual test that can prove if you have it or not.

    behcets.org.uk/information-...

    behcets.org.uk/information-...

    behcets.org.uk/information-...

    If you are being referred to another consultant it maybe helpful if you can type out a one page history of your health problems and any diagnoses, treatment etc. Include photographs of anything visible and use the attachments I have given above to highlight anything you think sounds familiar to your symptoms.

    Whatever condition you do have...it helps to learn as much as possible about your condition and then it becomes less frightening.

    The main things is that the eye consultant you have seen sounds good and is obviously looking after you well. I hope the inflammation to your eyes gets under control quickly and you start to feel more on top of things soon.

    Hope some of this helps a bit....but feel free to ask any questions :)

  • Thanks for your response, luckily I live in London and Moorfields have been amazing. I saw the top doc and due to the characteristics of my posterior uveitis she is, I would say, more or less convinced. I have been referred to the behcet's centre of excellence London (this city annoys me but pays when it comes to health care).

    The eye doctor thinks they will say I don't have it and looking at the criteria that may well be the case. Unless, of course,they can attribute my tonsil issues to it although that is not on the criteria.

    I'm a journalist so like to investigate, but when it comes to this disease it seems to be a case of wait and see...

  • I also had continuous boughts of tonsillitis as a child and had my tonsils out at around 18 years old. It was later decided that this may well have been behcets rather than tonsillitis.

    I still get ulcers more at the back of the mouth/throat than i do at the front. So i wouldn't count that out as being similar to you.

    Not that i am diagnosing you of course.

    You are in good hands at the Centres of excellence and if they feel you may have behcets, they will get you going on some treatment and early diagnosis and treatment is the key to getting it under control.

    Good luck and let us know how you get on :)

  • Hi

    I have had behcet's for many years and have recently started with eye problems.

    I have worked for the last 30 years, although only had treatment for the last 6, so don't be too frightened.

    A lot of peole respond well to the medication for behcet eye disease so its best to stay positive.

    Unfortunately my overall disease is very aggresive at the moment and overwhelming the medecine i am receiving. However, you might be very successful with the medication- there are certaily lots of options the drs can try and you are in a great city to be treated. I see Prof Stamford at London COE. He is based at St Thomas but also works closely with eye profs at the various London centres. He is very proactive with treatment and does not hang around waiting for eye damage before getting on with serious preventative measures.

    Good luck with your treatment - it is frightening andd disturbing - I really hate it at times- so do cut yourself some slack if you find it so as well at times.

    best wishes

    Sian

  • Hey,

    I'm a similar age to you and I have uveitis from my Behcets, and have glaucoma as a result of the steroid treatment for the uveitis. One of my biggest worries when I started on this journey three years ago was around continuing to live a relatively normal life - at such a young age, being able to work for another 40 years is a big worry! However, with excellent care from the London Centre of Excellence (horray for living in London) and a relatively understanding employer, working life has pretty much continued as before. Apart from a few weeks off to recover from eye operations, as well as regular mornings/afternoons at the CofE, it has not disrupted things too much. I have been lucky so far, however, as I've only had one eye seriously affected at any one time - so while I've had periods of being able to see next to nothing out of each eye at different points, the other eye has worked ok. If both eyes had gone at the same time, I imagine things would have been a whole lot more difficult.

    Something that has really helped me get through is that, although I have reached this point of having very low vision, the vision has always returned to decent levels after treatment has been increased - the docs really are doing everything they can to get you fixed!

    Of course, as well as the physical symptoms, there is also the emotional strain and worry, which has a big impact on quality of life. I had counselling a few years ago and found this so useful for managing these worries, which otherwise were spiraling out of control.

    My advice is get a great doctor, think about counselling, and remember that treatments for uveitis are getting better all the time!

  • Very interesting, there are similarities there. I just hope I have a few months off the drama!

  • I'm sorry this is a late response but any problem with the eyes especially uvitis needs steroid treatment immediately, do not wait start the steroids straight away...

    best regards,

    rosshi

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