I've just joined this community as my 14yr old daughter is currently being investigated for Behcet's. I have found a lot of the posts extremely interesting and all seem to fit in with my daughter. In 2012 she was diagnosed as having migraines. She has a lot of headaches but these were very different. After ruling out everything else, migraines were diagnosed and treatment given. In June, doctors thought she was having another migraine. However, this lasted 5 days and I knew this time it was different. She was admitted to hospital and they discovered a blood clot in her brain that was causing bleeding and she'd suffered a stroke. Whilst in hospital for 4 weeks, they did loads of tests to try and find the cause but were unable to find anything that would point to this happening. We were ready to accept it was just one of those things that happen for no reason. Then in October she was poorly again and I took her to hospital, where she stayed for another week. She had a high temperature, horrendous rash on her body resembling meningitis, terrible diarrhoea, in agony passing urine, mouth full of ulcers, terrible stomach pain and had problems with her vision. The hospital started treatment for an infection but all the results were coming back as negative. A scan revealed her spleen was enlarged but couldn't understand what was going on. After 2 days, her consultant decided she must have a problem with her immune system and we then visited every possible department in the hospital! It was then the consultant mentioned Behcet's and referred her to Birmingham Children's Hospital to see a Rheumatology Consultant. He was of the opinion that Behcet's is a strong possibility and we are now waiting for our appointment for her to be seen at the Behcet's Centre of Excellence in Birmingham. Looking back, she's always had a lot of mouth ulcers, lots of bowel issues (which her GP said was IBS) and headaches. She's been to the GP 8 times since she was 5yrs old with suspected urine infections, which now makes me wonder if she had ulcers instead. We are now keeping a diary of all her "issues" which she tells us about and I've been interested reading a lot of the posts as she's experiencing a lot of those too.
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