Just got diagnosis...

[Bocksey]

I have just been diagnosed as having Behcet's... Not sure how I feel about it...

[sian35]

Ah sorry to hear this but hopefully you are now on the road to getting some appropriate treatment. Welcome. Sian

[lovenothate]

Hi Bocksey,

I would imagine that you may feel a certain sense of relief, I know I certainly did, after a long period of uncertainty and unpleasant symptoms I think a lot of us could relate to a feeling of relief to finally be able to get the treatment you need and to know that what you’ve been experiencing has all been genuine. You can certainly feel like you’re going mad at times when you don’t have a diagnosis and no specific reason for all your symptoms.

At the same time it can also be a scary period, for obvious reasons. But please be assured that there will be a treatment out there that will help. Many people go on to lead a full life once their symptoms are under control.

Wishing you all the very best,

Will 🙂

[Jaxxi]

Hi Bocksey

When I was first diagnosed 3 years ago I felt such a mish-mash of powerful feelings.

I cycled through relief at finally knowing what it was, elation that my illness was not mental or psychological as many seemed to think, sadness that the illness is not curable, hopefulness that I would now get treatment to help, bitterness that it had taken 50 years to find out what was wrong, and sorrow for the younger me who had to battle through education, work and parenthood with no medical support.

Getting diagnosed was the start of a positive new phase for me. Life is so much easier now that I know what I am dealing with and can explain it to others. And the medications are definitely helping a lot.

I have always led a very full and adventurous life despite having untreated Behçet’s for most of it. Getting plenty of rest during flares, eating a very nutritious diet, staying active through gentle exercise like walking and yoga and limiting stress are the key things that have helped me.

Time to spoil yourself a bit, I reckon. Pamper the new Behçet’s you!

xx J xx

[Bocksey]

Thanks you guys. I would say I have quite a mild form of Behcets at the moment. I already feel that the steroid creams have been working and now I've been put on anti-inflammatory meds so hopefully they will control the ulcers - so yes I am feeling positive about being treated correctly finally. But obviously I do worry about the future... I am so glad there are people like you to share my journey with. Xx

[Stm252]

Welcome Bocksey. I am very very recently diagnosed and I have found this to be a whirlwind and a mixed bag. Scary, a relief, a burden. But finally a name to all of the issues. Wishing you some ease wherever you may need it as you start this new part of your journey with a diagnosis.

[Vervain]

Hiya!

You are not alone! I had my diagnosis confirmed a week ago. It came as a great relief as for several years I have been second guessing myself, wondering whether it was subconscious hypochondria (that possibility was encouraged by a few medical professionals who insisted my symptoms made no sense becuase they were not present when their appointments came round or becuase of the brief periods they presented).

A lot rests on perspective, - whilst it is a worrying condition and ive been under a cloud with co-morbidity and the knock on effect to my Mental Health the formal diagnosis has become a life affirming moment.

Sunlight of certainty coming through the clouds of confusion and self doubt. Whether it can disperse the brain fog im not so sure about but we can hope

Feel free to drop me a message if you like or we can chat on this thread.

All the best,

Salvador