Fybromyalgia/Bechets advise please

Hi can anyone give me some advise please.

I was told ages ago I have fybromyalgia, my GP did some research for me and suggested Bechets to the hospital this was instantly dismissed. I have good and bad phases of fatigue, pain, poor memory, and stiff joints. The reason Bechets was mentioned was because I get mouth ulcers and genital ulcers not constantly or as bad as some others I have read about but still painful. I mentioned Bechets to my dentist last week as my gums get sore, he told me I have gum inflamation, normally he cleans and polishes my teeth, this time he just polished them and told me I need to see the hygenist which will probably cost me £80 plus.

Would I have been referred to an ENT specialist if I had Bechets? and should I speak to my GP who unfortunatly is new and doesent know me. At the moment I have a flare of ulcers or as one GP calls them just cold sores.

Sorry to go on, I know there are many of you in much worse places than this but any advise would be good. I was given hydrochlorequinine for the ulcers and antidepressants for sleep this was about 6 years ago and I havent been back to the hospital since.

Thanks :}

10 Replies

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  • Hi,

    ENT surgeons know very little about Behcets as its a medical condition not a surgical problem. The only way to get s diagnosis is to see a Consultant with experience in diagnosing and treating it. As Behcets is rare and complex there are relatively few knowledgable Consultants around.

    If you are in England there are 3 Behcets centres of Excellence ( C of E's ). They are nationally funded and don't cost your GP or Dentist anything to make the referral. It's more tricky if you are in the other UK countries.

    Comparing yourself to others isn't helpful in this context as everyone with Behcets has their own version of the syndrome.

    I would take lots of photos of the ulcers, make a list of your other symptoms and request a referral. What do you have to lose?

  • The C of E website appears to be down at the moment. This is the link to the London one, the other 2 are in Birmingham and Liverpool.

    bartshealth.nhs.uk/our-serv...

  • Thank you

  • Hi

    You should ask your gp for a referral to a rheumatologist and then ask them for a trial of colchicine. I had terrible ulcers oral and genital which were diagnosed as herpes years ago. When I saw a rheumatology specialist he said it could be behcets and tried me on colchicine. It worked and I'm now almost completely free of both. If I get a flare up I increase the dose... but it's usually self inflicted because I've eaten tomatoes or bread or diary!

    Good luck

    Lil

  • Thank you

  • Hi doileyqueen. You can see lots of useful info on our website here: behcets.org.uk/ Details of the Behcet's Centres of Excellence can be found on the home page if you scroll down. You might also like to print some of the Behcet's Factsheets from here and take them to your GP: behcets.org.uk/information-... If you want some in the post - let us know info@behcetsdisease.org.uk Good luck and best wishes.

  • I had more blood tests today {they always come back ok} and have been told to take pics of any more ulcers, then he will decide if I should be referred to the rheumatologist again. I am really worried about my teeth as the dentist said I could lose them as my gums are inflamed. Not sure about such aggressive treatment at the hygienist though.

    Thank you all for replying I will be ready with the fact sheets next time I go. :]

  • Some more interesting reading, written by Joanne Zeis back in 2010 on BD and the mouth/gums/teeth: behcets.blogspot.co.uk/2010...

  • go back to the doctors its a rare condition and they may no nothing about it its taken them years to finaly sort my diagnosis out be firm with the doc ive been on many meds with little effect but I know meds help a lot of people but get to your doc asap

  • Thanks I appreciate your input

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