Behcet's Syndrome Society
4,074 members3,461 posts

havent yet been disgnosed with behcets but have mouth and genital ulcers

i havent yet been disgnosed with behcets but have mouth and genital ulcers, feel tired all the time etc. i have just found out that my uncle was diagnosed with this 30years ago. is this disease hereditory?

6 Replies
oldestnewest

I don't think there is a proven genetic link but I do know there are people who have more than one person with BD in their family.

Reply

thankyou, im just so frustrated not knowing what is wrong with me. im under the GUM clinic and im back ther next week as i keep having outbreaks of ulcer (up and down below). i was admitted to hospital lastweek with severe back pain. all my bloods came back normal. im off work at the moment which i dont do as i love my job but cannot find the energy and in so much discomfort at the moment.

Reply

Hi evo74

I can understand your frustration especially when you are going backwards and forwards to hospitals and feel you are not getting anywhere. It can take a long time to get diagnosed formally with this condition as there isn't an actual test to prove it one way or another. Most Doctors have to check that it isn't any other condition, before deciding that it is behcets.

Behcets is not classed as being hereditory at this moment in time, but you will see many people on this forum who have other members of their family who also have behcets.

My mother, grandmother and aunt all have very bad ulcers in their mouths and genitals, but have not suffered with all the other symptoms of behets that I have.

In the beginning my blood tests were clear of inflammation but as time went on and now having more frequent blood tests, they are persistantly high on the ESR and CRP rates.

There are others on this forum who have behcets and so do their children also have behcets and as you say your uncle was diagnosed with it 30 years ago. It may well be that research will find a genetic link, but this has not happened as yet.

Are they actually considering behcets and are the doctors you are seeing experienced in diagnosing behcets?

If not you could ask to be referred to a consultant who is experienced with behcets or ask for a referral to one of the centres of excellance. You can get the details of doctors and the Centres of Excellence by emailing the Behcets Syndrome Society by email at

info@behcetsdisease.org.uk

Good Luck with getting a speedy diagnosis

Andrea

Reply

Hi Andrea, I have now been referred to a dermatologist (waiting for appointment). I have had mouth And genital ulcers since the beginning of July and have been under the GUM clinic but the consultant now decided she not as experienced. I now have floaters in my eye so goin to the opticians tomorrow. I bet I had twenty lots of blood taken to rule out everything and all come back clear. Just hope they don't think I'm makin this up cos I'm so fed up now.

Reply

Hello evo74;

Basic pathology of the disease, vasculitis,> In addition to the symptoms of skin and mucous membranes of the eyes, joints, vascular, pulmonary, gastrointestinal, urogenital, cardiac and central nervous system involvement may vary. Date of Illness "Silk Road" in almost all of the countries in the world but is more common;

To discuss;

Reply

Hi evo74

I have sent you a private message in reply

Thank you for letting me know how you have been getting on

Andrea

1 like
Reply

You may also like...