Gp thinks I have behcets, awaiting bloods,,I'm really scared I'm going to go blind!

I already have fibromyalgia but recently started having flares starting with a temp then eye issues with joint pain and feel so nauseous. I have a long history of nasty mouth ulcers. My question is I have at least 3 more weeks before diagnoses, should I ask for an urgent referral to ophthalmology right now or can it wait? I'm terrified of loosing my sight :-(

12 Replies

  • You should get your eyes tested yes it is important with Behcets especially if this is what your gp thinks you have. It should be done asap i have always been told to go to hospital with ny eye issue since being told i have behcets!

  • Please go to A&E, your sight it precious, don't wait

  • Please don't panic, I'm sure your know if you have a problem with your eyes. Whatever you do you mustn't stress over it as stress makes it worse. I was diagnosed September last year and trust me all these thoughts including going blind worried me too but I have come to realise that to worry about what might happen will only make me worse.!

  • Thank you, what sort of treatment do I need to ask for/expect to get.

  • Are you getting any eye symptoms or just fearing them? Many bd patients never get eye issues.

  • In the UK we have NHS walkin eye clinics where you can just go yourself, without a referral or appointment.

    I noticed you live in Scotland and so not sure if they have the same there. Perhaps someone can help with that.....or you could google NHS walkin eye clinic or something similar.

    Also you could go to a high street optician as a lot of them now have retinal camera's so they can see and photograph inside the eye and at the back of it. If they suspect a problem they can also write an emergency referral letter there and then.

    Please don't leave eyesight problems to chance or waiting too long.

    Good luck with the rest of the diagnosis


  • hi Peepo hun,

    As someone who lost the sight in my left eye suddenly and totally unexpectedly, I would recommend never leaving any eye problem you are concerned about to chance.

    I had no symptoms, no pain and no warning so if you are concerned at all with some signs then please go and just get it checked out before you main diagnosis appointment okay ?

    Much better safe than sorry hun. Mwah!

    Take care, please don't get worried just get into action okay ? :)

    tootles xx

  • Thank you, what sort of treatment do I need to ask for/expect to get.

  • Oops sorry for repeat post,,no idea why it says I'm in Scotland,,,I'm in cornwall! Lol no walk in eye clinics here,,it's cornwall lol,,,,lovely place to live but facilities rather lacking,, yes I do have a problem with my eye, optician looked at it gave me eye drops and said go to gp in a week if no better, went to my fantastic gp and straight away he said behcets having bloods checked next wedsday then I go back 2 weeks after bloods to gp to hopefully confirm diagnoses. This is so very different to my fibromyalgia,,,the pain in my joints so much more intense and this eye thing very irritating,,at moment using bromine eye drops,,,going to make some calls today to hurry things along regarding eye,,,thanks guys xxx

  • sorry peepo about getting Scotland mixed up with cornwall ?????

    my brain isn't working so good lately so forgive me for that :(

    I have vision problems [double and blurred] and also a field vision problem on the right side where I am blind. All with a drooping face/eyebrow on the same side makes it very difficult and painful to focus on anything. This is all dealt with by the immune suppressants and prednisolone [including eyedrops when needed] which is my treatment for behcets.

    But I also have Sjogrens which is another condition which people with Behcets and Fibromyalgia can suffer with.

    This gives you dry eyes, nose, mouth, skin and breathing passages, with aching joints etc. The eyes can become very irritated and require artificial tear drops to help, along with a good hygiene routine of washing the eyelashes etc.

    Sometimes the eyes can become infected because of this and I have also had to have antibiotic eyedrops and tablets for this.

    Good luck with chasing an appointment for your eyes. It obviously depends on what they find as to what treatment you will be given.

  • Saw optician,,he knew nothing about behcets but checked my eyes then wrote me a letterforms gp to make referral. Then saw gp who used the yellow drops and checked again, said not to panic as he couldn't see anything, he put iin the referral for the ophthalmologist and wrote me up for artificial tears,,and kept reminding me I don't have a diagnoses yet. I've decided to try and just chill out. However feel like pants,,hot red cheeks, dry scratchy eyes, sore mouth/throat, very painfully joints and gut ache,,and totally exhausted,,,this has all happened so suddenly

  • Hi - I have behcets and live in Cornwall! there isn't many of us.. did you get the diagnosis? hope you're well. :)

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