Possible Behçet's Syndrome

Hi there,

I have suffered with recurrent bacterial vaginosis since I was a kid. I've had pretty constant canker sores since I was a kid and a year ago I had to have a steroid injection in my eye due to "unexplained inflammation". When I put all 3 of these symptoms together I get Behçet's Syndrome. I had strep throat 4 or 5 times in the span of 2 years when I was a kid. Enough that I'm now allergic to penicillin.

I guess my question is how do you bring it up to a doctor? What do I even say? How do I ask and what tests are there for them to give me?

6 Replies

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  • There are no tests it is a symptom based diagnosis. Which makes it harder to diagnose. I would encourage you to be open with you regular doctor and ask to be referred to a rheumatologist. The rheumatologist can help you further. Don't ever hesitate for a second opinion... best of luck keep us posted, hopefully you don't have Bechets.

  • I was referred to an immunologist specialising in behcet's who was far more helpful than the rheumatologist I was seeing who had less experience with the disease. Not a great disease to have but atleast if you know what you've got you can work towards treatment for your symptoms. Best wishes x

  • Okay so you guys all menation rheumatologist... is it crazy that my mother also has debilitating rheumatoid arthritis and has since she was 19? This doesn't just seem like a coincidence to me... I feel like the only thing I don't get is the genital ulcers. I had 2 events of them and thought it was herpes but tests came back negative. Could this still be behcets?

  • I agree, I would just be open with your Dr (maybe bring some notes to remind you of your symptoms and dates). But, personally I had issues getting a referral to a Centre from several GPs and my rhuemy as they refused to believe it was Behcets.. I emailed straight to the Behcets centre in Birmingham with a list of all my symptoms and asked for help.. they replied and said I needed to be seen and to take their email to my GP and demand a referral.. this was a year ago and now I've been officially diagnosed with Behcets (and some other bits on top) - I also got an apology from my rhuemy for not listening to me when I first mentioned this in 2014. I'm lucky for being diagnosed so quickly (as I'm only 23), but I think it wouldn't have been so fast if I hadn't boycotted my GP/rhuemy. I would still suggest getting a good/understanding rheumatologist who can do your more regular checkups.. I'm still on the hunt for a rhuemy as even with my diagnosis I've had 2 who still refuse to believe I have it. Anyways, best of luck to you - hopefully you won't have too much trouble getting a referral! X

  • For myself, it took 25 years before a doctor could tell me that I had an imminent chance of having BD. I started to have my first ulcers at the age of 6! At the age of 28-30 i got my biggest flare up, and i went to see many doctors telling them I probably have Behçet but they wanted to eliminate all the other possible diseases before. Finally, what ultimately helped to make a Behcet diagnosis, is the positive blood test for the gene called

    HLA-B51.

  • Okay so you guys all menation rheumatologist... is it crazy that my mother also has debilitating rheumatoid arthritis and has since she was 19? This doesn't just seem like a coincidence to me... I feel like the only thing I don't get is the genital ulcers. I had 2 events of them and thought it was herpes but tests came back negative. Could this still be behcets?

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