Behcet's Syndrome Society

What to ask to be tested for

Hi guys, I haven't yet been diagnosed but have suffered all the same bad symptoms for many years but at 36 I am at my worst point. I am male very fit and active, I have been on dyoxicycline for well over a year which I feel had helped with mouth ulcers but I'm not sure what's going on with my skin, I have been diagnosed with foliculices but I'm convinced the ulcers and red puss like lesions are connected they flare up in the same way the ulcers do.

J have seen dermatologist who's was no help just diagnosed spots as foliculices and said he new nothing of ulcers and I should see a dentist.

I am back at my doctors the wed and he should have the swab results from my ulcers but I need to know what to ask to be tested for, I know I need to see a rumatologist ,But how do I get my doc to refer me???

5 Replies

Hi and sorry for your problems. The difficulty with autoimmune diseases, especially BD is that there are no tests. Diagnosis comes by way of certain symptoms within a period of time. When I first had what is now BD it took just over 12 years to get a partial diagnosis and later full. There have been improvements in time now about 4 years I believe but still it is so important to get the correct diagnosis and therefore the best treatment. I do hope this helps and wish you get some answers soon.



Thank you bill, I have been diagnosed to a rheumatologist now. I am praying I get a quick diagnosis and get the correct mess asap, desperate for some normality back in my life.

Thanks again👍



If you live in Engkand you can ask for a referral to one of the Behcets Centres of Excellence

They are nationally funded and don't cost your GP anything. If you are elsewhere in the UK then it can be a bit more difficult but there are some Consultnats with experience.

Dermatologists aren't great with systemic disease. Behcets is a rare, complex condition. Your best chance of getting a diagnosis is seeing someone who has experience n diagnosing and managing it. Take lots of pictures of your ulcers and rashes etc and make a note of any other symptoms.

Good luck and don't take no for an answer!

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Thank you

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Ask to see a rheumatologist and you need to be tested for herpes, crohns,ulcerative colitis and a bunch of other things, of they come back negative then you probably have BD get your eyes checked by an opthalmologist ever year.


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