go say's bechets disease and my dermatologist... - Behçet's UK

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go say's bechets disease and my dermatologists says it still could be herpes

samhawks profile image
4 Replies

my gp thinks I have db but the dermatologist says it could still be herpes even tho 4 swab have said negative and I've been given tablets for herpes but they don't work , but said she won't rule out bd but I don't have every symptom even tho I have most ,, she gave my steroids after the worst flare up ever and it worked ,, I took photos to show her but she didn't seem bothered my gp today has put me back on steroids and still thinks it bd but why is the other doctor still favouring herpes I just want to well , any advice , I've checked on bd site and it me without to much joint pain

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samhawks
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4 Replies

Not everyone gets joint pain, not having much doesn't exclude you from a diagnosis of BD.

Is your Dermatologist a BD Specialist? I think quite a few patients are told they have/might have herpes and this is often by a sexual health/GU doctor. Not ruling out BD isn't terribly helpful as it isn't a diagnosis either and there is no proof that you have herpes.

Therefore I think perhaps a second opinion would be useful - a referral to a Centre of Excellence if you are in the UK, or a Specialist from the recommended list that the Society can provide.

samhawks profile image
samhawks

thank you , i think a trip back to my gp and ask where else i can go is on the cards as the hospital wasn't helpful and my gp gave me every blood test going so it was all done by the time i saw dermatologist and everything is fine me apart from ulcers and headache and felling very unwell ,i get them in my throat and cant talk ,

If you don't know already, there are quite a few things you can try to help with those nasty ulcers. If you type ulcers, ulcer treatment and related words into the box in the top right corner, you will see lots of threads about it.

There is also a fact sheet here:behcets.org.uk/Documents/ul...

andreafm profile image
andreafm

Hi there

As Tigerfeet says, quite a lot of us were diagnosed with herpes before being diagnosed with Behcets. Not responding to the Herpes Treatment and responding to Steroids must be a clue and they can also swab the blisters/ulcers to check if it is herpes.

If you put the word herpes in the search bar in the top righthand corner, it will bring up all the other posts where herpes has been disgust. You will see it is quite common for it to be mistaken.

Your G.P sounds very good and I am glad that he/she still thinks it could be Behcets as at least this will still continue to be looked at. A second opinion is the way to go and as Tigerfeet says if you are in the UK you can ask to be referred to the Centre of Excellance nearest to you. The Admin Dept of the Behects Society have a list of consultants who have Behcets Experience so you could email them on

info@behcetsdisease.org.uk

In the meantime it might be good to put together a one page history with the details of symptoms and any treatment and what response you had to that treatment. Don't just list the blisters/ulcers, also list other symptoms/illnesses as you never know they may help the diagnosis. Keep it short and to one page as Dr's don't like reading too much. Also take photo's if you feel comfortable doing so....believe it or not I even took pictures of my never regions - as they say. You can take the picture at a certain angle so that

This will help prepare you for when you see another Doctor and help the Doctor to see exactly what has been going on.

Good Luck

Andrea

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