Bechets fits my symptoms perfectly - except I ... - Behçet's UK

Behçet's UK

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Bechets fits my symptoms perfectly - except I suffer massively with ulcers up my nose not my mouth!!! Could it be bechets? Thank you

barkingmad profile image
6 Replies

Undiagnosed but need answers :-( Thank you in advance. xx

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barkingmad
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6 Replies
scruffy1 profile image
scruffy1

hi there you can get ulcers up your nose with behcets i have been getting them for years before i was diagnosed also oral and down below as well.how close are you to a diagnosis of behcets as if you do have behcets this forum is superb for information and support hope this helps

regards chris

Ktmc99 profile image
Ktmc99

Hi

I get ulcers up my nose too. You can get them on any mucous membrane; Including all through your gastrointestinal system.

Hopefully you don't have BD. it is a truly wicked disease.

K x

billi profile image
billi

Hi and yes I get ulcers in my mouth, nose, lips, vaginally and anus as well the gastric tract. So it could be Behcets but it could also be many other diseases. My best advice is to keep taking pictures of an ulcers you can and keep a diary as to length of flare, pai. Levels etc. I say this as often by the time you get an appointment the symptoms can be in remission . If you are in the UK try to get your GP to refer you yo a centre of excellence in LOndon, Birmingham or Liverpool. Failing this do some research online for Rheumatologists with Behcets experience and get a referral for the nearest one to you. Stay with the site as you will get lots of advice, help and a good ear from us all.

Take care

Hugs and Smiles

Billi

Please do let us know if you need any information on the referral process to one of our Centre's of Excellence or Bechet's specialists. Feel free to message me or the society with your questions.

I agree with Billi, photographs and a diary of symptoms are so helpful to bring along to your appointments/consultations.

Best wishes!

jean

devonshiredumpling profile image
devonshiredumpling

Oh, yes to nasal ulcers! I had one get too big for its boots and it's worked its way through from one nostril into the other. The surgeon said it will never heal. It doesn't cause me too many problems other than that it bleeds a lot. Like someone already said, you can get ulcers on any mucous membrane with Behcets - in fact, anywhere there is a blood supply. If you have got BD you've done awfully well to find this site - I wish it had been around 8 years ago when I was diagnosed. Although having said that, BSS (behcets.org.uk) was live and well and I owe them a huge debt of gratitude for those early days.

infliximab74 profile image
infliximab74

Hey i get them up my nose as well as everywhere else. I was diagnosed at 24 but suffered with this disease from small. At 9 i was hospitalised and it has never stopped. I have had all treatment right through to campath just 2 weeks ago.

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