My relief in finally being diagnosed - Behçet's UK

Behçet's UK

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My relief in finally being diagnosed

7 Replies

This is my first time posting like this so I'm a little out of my depth but i felt a need to do it for all you sufferers out there that have probable/suspected Behcet's just to prove there can be light at the end of the tunnel. Finally over 10 years I was diagnosed yesterday after getting the one last major symptom they needed me to. It's been a painful few weeks, but after years of waiting i feel relief that i finally know for sure. It's like a huge weight has been lifted off my shoulders and i know in time it could happen for those of you who fall in to the category i did. I wouldn't wish this disease on anyone or myself but the not knowing was a hard thing to deal with when I had the doubters and people making the "well you look well" comments when I was mentally and physically unwell so now i can finally say to them all it's Behcet's for sure and you were wrong to judge on something you know nothing about. The saying "don't judge a book buy it's cover springs to mind. I just want to say to you all on those really hard days stay strong, believe in yourself and keep the faith it'll happen in time.

Thanks for taking time to read it's appreciated

Caroline

7 Replies
goodlife profile image
goodlife

Hi Caroline, I'm sorry that you have had a painful few weeks but I can hear the relief in your post that you now have a complete diagnosis. 10 years is such an unbelievably long period of time to wait.

I am a probable and still hoping that its all been a big mistake, I think its called denial, lol. Wishing you a peaceful next 10 years! By the way will you be starting DMD's now? Jill

in reply to goodlife

Thanks Jill! I know what you mean about the denial lol! It's been a draining 10 years as well. Excuse my lack of knowledge but what do you mean by DMD's do you mean my meds?. I'm a little out of it today as they've upped my dosages yesterday. Caroline

scruffy1 profile image
scruffy1

hi caroline welcome to the behcets club i can empathise with your relief at being given a diagnosis and the comments people make when they have no idea how you are feeling inside i still get that kind of thing but just rise above it as only you know what its like and on this forum you will find help understanding and humour from all those who have BD i personally have found it to be a lifesaver so welcome once again and good health

kindest regards

chris

in reply to scruffy1

Thanks Chris your reply is greatly appreciated. I agree a little bit of humour goes a long way.

Kind regards,

Caroline

Hello Caralou9 and welcome to the forum. You've found a great place. The members here are very supportive and knowledgeable.

I am just wondering if you were diagnosed in one of our Centre's of Excellence? Do let us know if there is anything we can help/advise you with, as being newly diagnosed can bring lots of questions to the table.

Best wishes!

jean

in reply to

Hi Jean,

Thanks you for your kind words it is much appreciated.

I was diagnosed by my Immunologist here in Newcastle. Until being fully diagnosed i wasn't aware there were any Centre's of Exellence's.

I'm in middle of a relapse so trying to fight it as best i can at the minute.

Kind regards,

Caroline

in reply to

Well you just take care of yourself and, only when and if you want, I can send you info on the centres. If my geography is correct, I believe you are in between Birmingham and Liverpool.

Bye for now,

jean

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