Awaiting diagnosis

[Smell70]

Hi, my husband has just been told it is likely he has Behcet's , we are currently waiting for blood test results and to see what is next but the Dr is pretty convinced this is what it will be. Neither of us had heard of the disease before Monday and it has come as a bit of a shock! Nice to read some of your posts and not feel so alone.

[billi]

Hi and welcome. Are you in the U.K.? If so we have Behcets Centres of Excellence so you will be in good hands. You say you are waiting for a blood test, but there are no tests blood or otherwise to get a diagnosis. It is all based on symptoms and 3 out of five in particular during a time range. It is extremely important to get a correct, certain diagnosis and therefore receive the right medicines and treatments. There are many simililarities to other autoimmune diseases and most of us have waited many years for a diagnosis although over the last 10 years there have been great improvements, thanks to the Behcets Society here in the U.K. I wish you and husband well.

Billi

[Smell70 in reply to billi]

Hi Billi thank you so much. Yes we are in Bedfordshire so nearest centre for us is the London one. He has had the mouth and genital ulcers 3 times in the last 8 months and now reading up on the disease we can relate lots of other symptoms such as sore eyes which until now we have put down to Hay Fever. I think the blood tests he has had are to rule out other possible reasons and also he has had a Cholestral test but I don't know if that is related. Many thanks for your respnse, Kelly

[billi in reply to Smell70]

You are welcome. Do let us know if you get a diagnosis confirmed and we can help with coping tips and other advice either as posts of private message. I have suffered for about 32 years now and there is life with BD.

Billi

[Gerald81]

Hi, I have had Behcets nearly all my life. I am now 81. My Behcets was diagnosed by taking a swab from one of my genital ulcers. I have taken steroids most of my life to keep it under control. Mind you, steroids taken over a long period has it's problems. Good luck and all the best

[Soph19]

Hi, I had my HLAB51 tested which apparently helped with diagnoses and mine came back positive. If this isn't being tested you need to request it because my doctor was asking all the time and they kept telling him no because it was so rare for it to come back positive! I could have got a diagnoses years ago.

[juliebover]

I'm B51 negative but still have diagnosis of Behcet's.

[Shahzady]

Please tell me is cold sweating is the part of this disease?

[Jaxxi in reply to Shahzady]

I get a lot of night sweats, and I have heard others complain of this too. I sleep with a very thin cotton duvet, but still wake up drenched.

[UKADMIN Partner Behcet's Syndrome Society]

Good luck and please contact us if you need any information. Do check out our Family day in Cumbria and also the Conference in Manchester. behcets.org.uk