Hi every1, i have recently been diagnosed with mild Behcet's (doesn't feel very mild), the doc has said that it wont get any worse

Hi every1, i have recently been diagnosed with mild Behcets (it dosent feel very mild), the doctors has said that my symptoms shouldn't get any worse, at the moment i ger oral ulceration, joint pain and stomach problems. Just wondering if this is the case for most people or do the symptoms get worse over time? thanks Leanne x

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  • Hello lealea32

    Diagnosis of the disease is made according to the following criteria: At least 3 times recurring canker sores in the mouth with the presence of two or more of the following criteria:

    Genital sores

    Eye involvement (uveitis and retinal damage)

    skin manifestations

    Positive pathergy test (a test for Behcet disease)

    At least three of the above criteria may be diagnosed by the presence of Behçet

  • Hi lealea32,

    There is no reason to assume that symptoms will get worse over time. BD affects sufferers differently, so no-one can give you a definitive answer.

    It is known that some people can get worse, some people can feel much better, and some can go into remission, but try not to dwell on what could or might happen, focus on getting the best advice, treatment and support that you can.

    Symptoms, whether mild or severe, few or many, need to be and can be treated and managed to enable you to feel as well as possible.

    Doctors look at us professionally and symptomatically, so someone with joint pain for example, may be considered to have a 'mild' case of BD compared to someone with neurological problems,

    The way your (or anyone elses) symptoms affect you is important and I am sure everyone here will acknowledge that.

    At this early post diagnosis stage you may have lots of things on your mind - the Society website is packed with useful information and everyone here on the message boards will help whenever they can.

  • Sunset my daughter has Behcet`s but had a negative pathergy test..

  • Hi Tamirra

    Pathergy only a minority of patients with Behcet's phenomenon (i.e., have a positive test), respectively. Mediterranean region pathergy patients are more likely to show a positive response. However, only 50% of patients with Middle Eastern countries and Japan have this reaction. This reaction, the United States, and even less common. In addition, other conditions may sometimes result in pathergy test, the test is not very specific 100%. Resulted in a negative pathergy test in the diagnosis of Behcet's disease, but my diagnosis has changed. Men at an early age

    ill, and the poor prognosis in individuals with HLA-B51 positivity

    reported.

    Daughter healthy living;

  • I think the diagnostic criteria is a guideline to point docs in the right direction. History and presenting symptoms at time of assessment are also used to diagnose.

  • Hi Sunset and all

    I wasn't given a pathergy test, but when I have blood tests I get the same reaction as a positive pathergy test. i.e I get extra pustules along the line of the vein where the blood was taken. Even worse when they fit a blood cathetar and they always think it has gone septic when it happens.

    This has been going on for some years, but not every single time.

    I took photo's of this and helped my consultant to diagnose me and the photo's are placed on my file with a number of other photo's of ulcers and pulstules.

    I haven't had the HLA-B51 test either so can't really comment on that.

    Andrea

  • Yeah andrea thats what happens to Sinitta with the canular her hand swells and goes septic, so its the same as a positive pathergy test.

  • well it was good enough for my consultant...but I couldn't comment on whether other consultants would see it the same. The pathergy test is not 100% positive of behcets as this can also happen in other disorders. The other symptoms of behcets would need to be present and investigations would disclude any other condition.

    It is basicly an overactive inflammatory response to the needle going into the skin and the vein.

  • Andrea - I also take pics of things I think are significant - I often don't have those specific problems when I go for the appointment. I usually email them to my doc a few days before so she has had time to look before I get there. All part of our education programme for docs :-)

  • Yes Tigerfeet, I do this in between consultations. Also because I am in 3 to 4 different hospitals I also give each consultant copies of eachothers reports, so each file in each hospital is upto date.

    I find this makes the consultations go so much easier and doesn't leave it open to the consultants interpretation of my explaination of what has been going on......if you know what I mean ;)

  • Hi Leanne, I don't have BD but a close relative of mine has. He was also told in the beginning his case was mind. My advice to you would be to keep a diary as if it's early days there may be a lot going on that you don't realise is connected to the BD. My relative was experiencing all kinds of strange symptoms which his Rheumatologist, GP and Neurologist were shaking their heads at. It was only when he was recently hospitalised that the Consultants got together and connected the dots. His case is far from mild. In hindsight, things would have been a lot easier for us if we had had it all written down as he has had so many hospital and GP appointments, he couldn't always remember everything. As he didn't relaise he was ill, his memory was also impared. I hope this helps.

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