Behcet's Syndrome Society
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Do you ALWAYS get ulcers with every flare? Awaiting diagnoses,,,,,

I've read that the diagnoses criteria requires at least 3 ulcers in 12 months, well I have definately had more than 3, I have a history of very nasty ulcers, (not genital) but when I went on iron tablets they improved hugely, I now only get 1 or 2 a month now. I've had fibromyalgia for years but over the last few months been getting new and alarming symptoms (dry scratchy eyes, muscle twitches, sharp stabbing pains in joints and head, feeling drugged, severe fatigue, dizziness, sore throat, sharp pains in gut, diarrhoea and nausea, temp all over the place, confusion) it feels very different from fibro and gp thinking behcets. Could I still have behcets even though my ulcers are better than they were?

3 Replies

Yes you can... the ulcers in my case are not the worst symptom I have. I have ulcers virtually all the time but they fluctuate in intensity and size. I also had previously been diagnosed with fibromyalgia, chronic fatigue syndrome. It is common to have behcets and to be diagnosed with fibromyalgia and some Dr's call it Arthralgia.

It's a good job your G.P is on the ball as this can go missed for some time. Is he/she referring you to a consultant ?

It will be helpful if you keep a diary of symptoms and also write a short 1 page history of what has gone on before with your health. Giving any previous diagnoses, symptoms etc and dates with consultants names. Also, if possible take photo's of anything visible as this helps a lot. There's nothing more frustrating than waiting to see a consultant only for the symptoms to not be there or not as bad as they had been before.

Good luck with this Peepo



Thank you, ,,since writing this post this morning an ulcer has appeared! Lol, yes I'm keeping a diary but didn't think of doing a "history" which makes sense really because I've now realised that a lot of unsolved issues could be behcets. 2 years ago I had an emergency endoscopy done ( eventually they realised I had a serious case of gall stones) and they saw an unexplained "pouch" and on ct scan they saw pouches on the bowels as well,,(said diverticular ).. Roll on diagnoses,,,


Thank you xx I tried the brown inhaler trick on my ulcer ..seems to be holding it bckfingers crossed, stings when I do it though...


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