What to ask to be tested for

[Hampo81]

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???

[billi]

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.

Billi

[Hampo81 in reply to billi]

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👍

[Hidden]

Hi,

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

behcets.nhs.uk

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!

[Hampo81 in reply to Hidden]

Thank you

[Teapartyatthemalfoys]

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.