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
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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.

behcets.org.uk/

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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.

Hugs

Clare

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