Behcet's Syndrome Society
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Finally getting follow up Appointments!

Finally getting follow up Appointments!

So after being diagnosed in April 2012 after being hospitalised for 5 days, then being diagnosed with an underactive thyroid, had issues with eyesight, had 11 doctors appointments in 12 months (not including the hospital appointments!)....all it took was a trip to Coronary Care to get a followup on my diagnosis. Phew!

Heading for an ophthalmologist appointment on Monday and a Rheumatologist appointment on Wednesday- finally!

Does anybody have issues with their eyes? I have been waiting for months to see the ophthalmologist and my eyesight is terrible now, with floaters etc....not fun!

10 Replies

Hi Denise

I am glad things seem to be on a better track now. I know what you mean about appointments as I have been having 2-3 appointments nearly every week last year and rather hoping they will be reducing this year as it really dragged my husband and I down.

I have had problems with my vision with blurred/double vision and reduction of colour,along with a field vision problem. Have had MRI's and recently also some brain/nerve tests at Moorfields but don't get the results until a couple of weeks time. Over the xmas break the left one has also come out in thinking of pushing to get seen even quicker, although I doubt I will suceed.

have you actually been diagnosed formally or is this what you hope to get on Wednesday?

Either way, I hope they get to the bottom of your health problems....



Hi, yeah I was formally diagnosed in April 2012 after a biopsy on an ulcer (lovely!)

I never had any follow up appointments, unless something went wrong! Hoping everything goes well and I can stop seeing the docs soon....or atleast less!

I have tried to push for appointments to be quicker but it's like banging your head against a wall! I was told my eye appointment would take up to 6 months but I got it after 4.....I just hope there hasn't been any deterioration since then!

Hope your results are good! :)


Hi there Denise & Angela although I've been told by my neuro & rheumy they think iit could be Bechet don't yet have a deffo diagnosis. Previous to a horrible bout of uveitis they kept saying it could still be post viral syndrome...... As all bloods coming back clear.

I'd been hospitalised a few times by then and as you both say the amount of specialist appointments I had by then was insane.... Really and truly a full time job in itself. And when you're off sick you just don't have the stamina.

So I don't know why the uvritis was such a low point for me, but it was my tipping point.

I had a migraine with eye pain that made me howl, then I was having flashes of light in my peripheral vision. I went to the optician and my eyesight had gone from normal to needing a prescription. I told my GP at our weekly meeting and she sent me immediately to the city eye hospital (Birmingham centre of excellence)

The young opthalmologist told me I had abnormal cells in my eyes and I felt so shit I just started to silently cry while he was trying to look in my eyes. He fetched the lady consultant who saw the mention of Behcets in my notes (being seen by neuro at the city)

I recovered after a course of steroid drops, but my eyes are a constant source of inflammation and discomfort for me. They have been inflamed since this illness came on l10months ago, but I never had red eye so never suspected anything serious wrong.

I strongly suggest a trip to your local eye A&E if your eyes are bothering symptoms were very slight as I always have had floaters. My GP gave me a letter but you can present without one but they will only see you that day If you could have a sight threagthening condition.... Which with even possible Bechet you could unfortunately.

I know its a potential waste of a day, but I'd hate to damage my sight.

I make a point of taking a couple of quid in coins cos there's always some poor sod who gets rushed up with no them a coffee and I have met some lovely people in hospital waiting rooms.

My husband comes to get me as soon as he leaves work and is constantly amazed to have to meet all my new

My GP just referred me to the centre of excellence in a hope I get more joined up care.... I hope that they read my notes and say “you haven't got Behcet”

Struggling a little to type this on blackberry on train so excuse mistakes. Love Jill


It's tough to go to the appointments when you don't feel well, and in m y hospital they usually leave you waiting for hours. I spend 10 hours in A&E before Xmas before finally being admitted for the night. Was in the hospital since 8am (stupidly thinking if I went in earlier I would be seen to quicker!)

I have been getting migraines over the past few days too and the light bursts, I think something has flashed and don't know where it has come from. Over the past few days, I have been sleeping through the day because I can't handle the brightness of daylight; I'm slowly becoming nocturnal! :(

I always forget the coins haha! It's a good tip because usually an appointment in hospital ends up being a full day in hospital! :)


Just a very short comment here because am running very late, but had to comment on a) really hope the appts bring you a proper diagnosis and care plan Jill - hang in there and b) what a lovely, lovely idea to take a couple of extra pounds to an eye clinic - I totally see how that works.... Was also going to comment that if you have eye worries, then get checked out immediately, but can see you know that already!!!!!

Lynn x


Denise...yes i totally's mind numbing spending 10 hours and god does it grieve me that I can't pass the time reading my Kindle (I am a BIG reader) or playing games on my phone as my eyes are also too sensitive ..... thats why you gotta go prepared with food, drink and cushions and chat to It really does pass the time, and you find that here are things you can help people with really makes you feel better about yourself.

Those "flashes" are the sign you ened to go....I have them with the uveitis sorry honey :-(

Thanks Lyn...It's been very scary having different parts of my body failing, I wish it were post viral syndrome but I have decided that I need to confront that it may well be Behcet's.....I was sticking my head in the sand late half of 2012 when the two consultants mentioned Behcet's.....I am facing my fears now. Lovely site, with lovely people so I am grateful for people to chat to in the same situation.

Love Jill xx


I'm a huge reader too and it helps to have a good book !!

Monday is my appointment so hoping I get some answers then. Had to get my boyfriend to drive me into town today because I didn't trust my eyesight :(

The last time I was in A&E; my neighbour was in too so we chatted for hours! It's one way to get to know your neighbours haha!


Hello me lovelies

I was diagnosed with BD after suffering for many many years with ulcers, aching joints and fatigue, it was only when I had terrible clouding in my right eye. I popped into the optician to say can they have a quick look, they said no go to A & E or the Eye Hospital. I went to the local A & E and was seen in the eye department. I had uvitus it was only when they started taking my medical history that the young doc said i know what you have. I was referred to Prof. Stanford at the Weston Eye Hospital and I was referred to the BD clinic at St. Thomases where I was diagnosed with BD. I have been told that if I ever have problems with my eyes where ever I am to go to A & E and tell them I have Bechets.

If that hadn't have happened with my eyes goodness knows how long I would have continued to suffer and thinking I was going out of my mind. So agree with the others get to A & E.

Hope you get it sorted :)

Love sharon x


I lost my peripheral vision last September. Also over past year eyesight has deteriorated to an alarming rate, was in southern general as emergency pateint seen by neuro and opthalmology and 5 months later still no way forward. I think the eyes are affected by BD so much and it seems that the medical profession are not keeping up with it as I have had no tests that can tell me why this is happening. I suggest at all times you go to the consultant and tell them your problems and hopefully your eye difficulties can be explained.

Blessings Yazzy


Yes I really need to get sorted! I have always noticed 'floaters' in my eyes since i can remember but it is in recent years/months that I am noticing a serious deterioration!

I had a red ring around my iris when I had a major ulcer flare and was hospitalised but since then there is minor redness but major floaters/cloudiness!


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