Behcet's Syndrome Society
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Suspected Behcet's... Any advice?

Hi all, I was diagnosed with CFS/ME back in 2000, but never thought it was the whole story due to the flares I have every few weeks (ulcers, painful red eyes, headaches, burning GI tract, pustules, numb and tingling arms, balance problems) which just don't match up with the ME. I found out about Behcet's through a friend, and my GP, who had never come across it before, agreed that it seemed to fit and has referred me to my nearest Centre of Excellence. While I am waiting for my appointment, I was wondering what the best sources of information on Behcets are, and whether the folks here have any advice or recommendations. Thanks!

2 Replies

Well, Jaxxi, you've actually found the best source of information - certainly for the UK. Take a look at the Behcets Syndrome Society site where you will find out all you need to know. And plough your way through the posts in the forum - especially the older ones I would say, when we were all so excited about meeting people who suffered from the same mysterious and sometimes agonising symptoms.


Hi Jaxxi, You have found the best place to find information about Behcets. The Society has lots of fact sheets available to you and there is loads of info on the site.

I have found being able to ask questions, share experiences, have a good old moan, or even be able to share something positive with people who really do understand how I feel, because they have Behcets too has been a real comfort.

Like yourself many of us went many years either with wrong diagnosis or no diagnosis at all.

Good luck with your appointment.

Tips that I have found useful: Write down any questions you think of before you go and take someone with you.





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