Does everyone diagnosed with Behcets have mouth ulcers?

[der456mil]

My daughter was diagnosed some 7/8 years ago and has many of the symptoms but has never had the mouth ulcers, is there anyone else in this situation?

[devonshiredumpling]

Morning! I've copied the following from the Society's website, which you will find exceptionally useful. The link is behcets.org.uk/menus/main.a...

'Suspected' or 'possible' diagnosis

Usually given when someone does not have mouth ulcers or has mouth ulcers but does not have 1 of the 4 'hallmark' symptoms but has other symptoms and signs of inflammation and other causes for these have been ruled out.

My understanding was that mouth ulcers are essential for diagnosis but with Behcet's all things are moveable! I have never had genital ulcers, but I do suffer from urethral ulcers - close enough I suppose.

Your daughter's docs must have had good reason for their diagnosis because it is not an easy diagnosis to get - even when you do have mouth ulcers!

[der456mil]

Thank you so much for your reply, my daughter was diagnosed by a very emminent professor at Bangor hospital. She has since seen more consultants than I can remember; one or two maintain she doesn't have BD but the others all accept it. She is currently a patient of a - rheumatologist, neurologist, cardiologist and dermatologist; she is awaiting appointments with a pulmonary consultant. She has been hospitalised more times than I can remember and has just been discharged after becoming very critical with Sepsis, pneumonia and being comatose. She is in considerable pain all the time, gets frequent infections and has had several of the other symptoms for years. I am so distressed about her condition it is good to be able to share this, thank you.

[goodlife]

Oh dear your pain must be awful too. As a mother I would accept this a dozen times over than see my daughter go through it...as a mum I can only suggest that not only is your daughters pain and distress very real, so is yours!

I'm in the possible Behcet category and as Di says it is not easy to get a diagnosis.

keep chatting , there are some very knowledgeable and kind people on this site with years of experience.

You don't mention the age of your daughter but I send you lots of hugs and kindness.

[der456mil]

Thank you so much; my daughter is 49, I am 73! I think she must have almost every symptom there is of Behcets; has been tested at least three times for possible Lupus but all negative. There doesn't seem to be another answer but Behcets. She has had a very bad year this year and there doesn't seem to be any letup in sight. Sorry to be so down but that's how things are right now.

[goodlife]

I'm 44 and this is my first year of illness. I have to say that I never knew what depth pain can go to, I always thought people said the worst pain was childbirth but I would argue not. How lovely that you are supporting your daughter...as I said you will find a lot of kindness and support on here, maybe your daughter would like to chat too.

where are you by the wat? there are centres of excellence...one is near me in Birmingham x

[der456mil]

We are in Newport, South Wales. I have read about the centre in Birmingham and would like my daughter's GP to make a referrral but the question recent yearsion hasn't been asked yet. We shall see what the New Year brings. I have to support my daughter, I love her very much and would do no other. We lost our eldest daughter to cancer almost ten years ago and I lost my husband six years ago after 48 years of marriage so life has been a bit of a 'you know what'! in recent years. Never mind, we battle on and hope for improvements. Thank you for your support. Jan

[devonshiredumpling]

Jan you must be making your daughter's trials with this illness so much more bearable. My mum died in 1996 - I nursed her through cancer - before my BD was diagnosed. She was my greatest supporter. I am 58 years old but sometimes, when things seem very black indeed, I still cry for her. There is absolutely nothing like your mum and you are obviously a very special one.

[goodlife]

Di...you have a wonderful way with words, very well put.

jan...keep me posted the centre is at the Queen Elizabeth and is a wonderful hospital though it's a decent drive though so something to take into consideration. Love Jill

[bailey23]

Jan

I get the odd mouth ulcer but not big flare ups like some people but did suffer severe genital ulcers before my diagnosis, I have a very special mum who is my rock but I am hers too as she has a rare Auto Immune Disease and is on almost the same drugs as me. My dad died when I was 16 and I am now 41 and my mum is my best friend. If your daughter is as special as you are then you will get through these hard times and support each other.

Love and hugs

Angela

x

[beth12]

Hi Jan,

I have constant ulcers in my mouth and spent many years with genital ones too, the genital ones are rare now I am taking mycohphenolate and enbrel injections usually the mouth ulcers are an indication as to how I am feeling just one or two is usually when I get over tired and more usually means I am coming down with something else. I hope your daughter doesn't get them as they are for me along with the chronic fatigue is one of the worst parts of this.

[der456mil]

Hi Beth, the mouth ulcers must be awful for you, it is dreadful to have a constant pain and I'm sure eating must be very difficult. Do you have trouble sleeping or is the fatigue with you all the time anyway? My husband had MS and he slept well but still suffered with chronic fatigue, my daughter doesn't sleep well at all and is constantly tired; she has had genital ulcers but not the oral ones thankfully, she has a very sore mouth all the time but this has been put down to one of her medications and is believed to be Thrush. She also takes Mychophenalate along with three sheets of prescription drugs and medications! I do hope you will get some relief soon Beth and all of you who have this awful condition, my heart goes out to you all, it must be hard to keep cheerful at times.

In future I am going to give my daughter a name, it is very impersonal calling her 'my daughter' all the time so I shall call her Mary, I can't use her real name without her permisssion so until I ask her that's what it will be.

Jan

[beth12 in reply to der456mil]

Hi Jan,

the mouth ulcers are a challenge at times I tend to eat soft foods porridge, eggs, soup as long as its not to hot or spicy I usually sleep reasonably ok but when the chronic fatigue sets in its hard to sleep how ever long I do sleep for its not enough over the years I have learnt to just lie down relax in front of the TV and take whatever sleep that comes as a bonus. I am an and always try to see the upside of things and try not to dwell on on the bad days tomorrow might be better ! Enjoy your christmas x

[dawnie2750]

Hello...

mouth ulcers sore throat/back of nose and flu symptoms (aches and pains shivers) are my main BD symptoms..always...

I am finding that I am getting worse instead of better as I get older...

I hope your wee lassie is okay, and they get her on some decent meds that make life bareable...and like Di, all I want is my mammy when I feel crap too

hugs dawnie xx

[camie]

Hi I get mouth ulcers but not as many as I used to have them in my cheek at the mo and

I get them in my nose and ears and odd few down below thankfully not alot,and loss of sight in bote eyes,but like you Dawnie main symptoms are flu like but lately I have been very short of breath thank you you are all an inspiration x Camie