I'm a 60 year old white female and I have been suffering for over a year with this mysterious ailment yet to be diagnosed and rapid weight loss of over 70 pounds and I've seen over 40 doctors and specialist and had every test and lab work done that all of these doctors could think of and I've been diagnosed with numerous insignificant things but never forgotten a diagnosis for the MAIN reason for all of these symptoms. I ended up going ton3 different ENT doctors and the last one decided that I might have Behçet Disease and is sending me to another Rheumatologist to be tested for it on June 5th, 2019. My interest is in knowing more about controlling the disease and abdominal pain and weight loss. I would really like to speak personally to someone who has been diagnosed with it and is up to date on what we can do for our children in order for them not to suffer for as long as I have before being diagnosed.
Questions about being pre diagnosed with Behçe... - Behçet's UK
Questions about being pre diagnosed with Behçet Disease
I am sorry for your challenging journey and the difficult medical issues you have experienced. Just wanted to mention that I have rapidly lost significant amounts of weight due to gastrointestinal Behcets. Do you have abdominal pain?
Wishing yiu the best.
It may also be worth considering the other autoinflammatory conditions that are in the same branch as BD. Especially given the rapid weight loss. Have you been tested for Crohns for example along with other possible Autoinflams that are now identified, more and more able to be tested via genome. Many of these conditions if left untreated for many years, with inflammation can lead to amyloid deposits which can build up in various organs, the gastrointestinal tract being one. Certainly now its being recognised, here in the UK there is a centre specifically for testing people who have the signs of amyloidosis and have had years of a undiagnosed chronic inflammation condition.
This is a chart with some of the other conditions, its not the best one, but its the smallest. If you do a bit of searching you can find much info on the emerging area of autoinfammatory diseases and the genome project, plus the treatments that are now available and targeted. Its just getting the medical profession to accept we exist. Good luck 
Yvonne X
Hi, I haven’t had your symptoms, but re the children, it’s not always genetic, it’s not a given if you have it, that they would. They will likely test for HLA B51 but I don’t have it but have been diagnosed about a year ago. There does however seem to be a family tendency towards rheumatological issues. Best wishes on your journey.
Dismayed and Confused
Recently diagnosed with Behcets - living in Ireland
Bechets disease? 
Are there any doctors in Ireland who know about Behcets ??
