Diagnosis

Behcet's Syndrome
#1

My daughter went for testing for BD, the neurologist has finally diagnosed her with complex aphthosis. Has anyone heard of this diagnosis being made and it actually been BD, or can it develope into BD. I am not sure the right diagnosis has been made and only time will tell. I am very pleased this is the outcome - but it doesn’t quite add up in my eyes but then again I am not a specialist on this matter however do have a medical background. My daughter has developed mood swings too and has fits and can’t walk properly, she drags her feet but they are sending her to a psychiatrist as they think it is psychological

I am just a bit confused about it all.
Cheers Janey

#2

I hope your daughter gets healthy again soon. When I read in your post about her draging her feet I thought of my grandma. She has something called CMT and that is often the first sign of this disorder. (CMT= Charcot, Marie, Tooth, the names of the doctors who first diagnosed it) I am not saying your daughter has this and It does tend to be an adult onset disease like BD so I was just trying to get you some more info on what might be going on with your daughter. I really do hope she gets well soon, my prayers are with you,Denise

#3

Hello, I am sorry to hear about your daughter. I too was diagnosed with complex apthous a few years ago as the ulcerations were not enough to diagnose BD. However I have since developed vasculitis and eye problems and have now been diagnosed with Behcet’s Disease.

#4

please stay in touch with me, you are the first person to have gone the same route as my daughter. She had ulcers and skin biopsy and told it was not BD but complex aph however she was admitted to hospital again this weekend, things are just not right. She keeps having fits, she went to see her optitian who then said he could’t renew her prescription for glasses as she had ulcers on her eyes he said she had to see an eye specialist first. So things just get worse as time goes by, she has started university and they are really helpful.

Thanks for your reply,

Jane

#5

Where does your daughter live? I live in London and I am very fortunate to be under the care of Moorfields eye hospital. If there is any way she could be referred to them I would give it a go as they have the best doctors there familiar with BD and carry out a thorough examination on the eyes. The optician is not qualified to comment on this disease.

I understand how terribly painful and upsetting the ulcers are, I found it debilitating at times but these symptoms are much better now with time.

It does sound like she has some neuro involvement as well and I am quite surprised the neurologist has not diagnosed more than aphthosis. Is she undergoing any further tests?

Most importantly try not to worry. It can feel very isolating having a condition like this but I have found it really useful talking to other people and am very happy to share my experiences.

If you would like to email me feel free christinamcgeer799@hotmail.com

Take care and all the best for your daughter x