Newbie to Behcet's Syndrome

Hello everyone. You cannot believe how pleased I am to have found you. I have felt very alone over the past few years as I have only just been diagnosed. It is not easy to be in constant pain with something that other people really don't want to hear about so it is a huge relief to at least have a diagnosis and have proper medication that seems to be helping. I shall be reading your posts with great interest as I have a lot to learn about handling this condition.

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  • Hi ! I'm also a newbie ....diagnosed in April so trying to get my head around it too. Relieved to get a diagnosis as I haven't been feeling well for years especially of late. Yes, its not easy, I thought (and so did my friends and family!) that I was either a hypochondriac or just someone who was ill all of the time!! All of these symptoms, from the past few years, link. Atleast now I know what I am dealing with (although I am still waiting on my follow up from the hospital after being diagnosed ? Feel like the doctors were saying : 'You have Behcets....now go away!!! ) .... :)

  • How lovely to hear from you, Denise, and to know that I am not alone (although i amthe onlly one where I live!). I am going to see my GP on Monday to give her the diagnosis and discuss what we need to do. One thing it has thrown up is that my vague worries about blurry eyesight need looking into urgently, so that will be the first step for me. I lost my hearing a year ago (now wondering if that is Behcet related) and dread losing my sight so must be sure of careful management. I am now on steroid treatment and that is proving to be very helpful, although I need an anaesthetic spray before eating. The problem with chronic non-curable conditions is, you are quite right, doctors don't really know what to do for us and will try to slip us off their books; fortunately I have a wonderful and very supportive GP.

  • Hi, I was recently diagnosed too and it's really wonderful to find someone a support somewhere.

    I feel you, don't worry hopefully it'll get a little better along the way.

    Feel better :)

  • Hi all. I too am just recently diagnosed last night. Suspected it for the past year but good and upsetting at the same time to get the diagnosis and now start to treat it and get my health back on track. Interested to read on a different thread about the value of a low sugar diet. Best of luck with everything.

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