Behcet's Syndrome Society
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Probable Behcets

I have just been discharged by the rheumatologist after 5 years with a probable Behchets diagnosis. Probable because I have from time to time oral and vaginal ulcers, acne and joint pain, not necessarily all together and without the presence of definite vasculitis or eye involvement. It doesn't compartment neatly into a defined classification. Hopefully it won't get any worse.

I have been on colchicine twice daily for about 3 years or so now and it seems to have staved off the most troublesome problems so that I now have rare instances of ulceration. Pain is managed well with pregabalin and paracetamol only (I have stopped taking codeine as it rattles other problems).

I also have auto immune hypothyroid disease (Hashimotos). One thing I have learned is that all these conditions have very fuzzy edges and often overlap. If I can offer any words of wisdom, it's these:

Don't get hung up on diagnosis. while it's great to have a name for something, these can often become labels. I never needed a name, just to feel better.

Chronic pain is just that - long term to permanent. It may never go away. Focus on coping and management, learn to live with it. If something makes it worse, don't do that thing.

While it's good to find out about your condition, don't go looking for things to be wrong. In my case it's good to know that I need to get urgent attention for eye pain, for instance, but that doesn't mean that every little bit of redness or itching is uveitis. Just because you might get it, does not mean you will.

Focus on the positive, symptoms you don't have, abilities you still do have, and the strength you show every day knowing you have something to deal with for life that will never get the better of you. You might have it, but it certainly does not have you!

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Hi couldn't have put it better. I contracted BD 30 years ago and for 10 years was passed from pillar to post and with no specific meds aside from paracetamol and mouth washes. It took another few years to get to the right doctor and then eventually diagnosis and treatment. The advice that you have given is exactly what that doctor told me and I have passed onto others on this site, especailly those still searching for some kind of diagnosis . Acceptance is probably the hardest part of the journey and don't ask why me ask why not? Then get on with life it's the only one you'll have. Yes there are times when I haven't been able to do things I used to do or not as well but there are many people worse off. Learn to help yourself and eventually help others.



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