Please help me - how does the diagnoise work?

Hi,

Was hoping people would be kind enough to share their experiences of being diagnosed and what symptoms you had at the time of diagnosis?

In may this year I suffered with a couple of very painful and large genital ulcers and a couple of small mouth ulcers - I was in hospital at the time being treated for a slipped disk in my back when the ulcers appeared. They sent me to the GUM clinic for suspected herpes. Blood test came back negative for herpes and the GUM doctor mentioned the Bechets.

I was given an out patients appointment with a rheumatologist which I attended and was told it was very unlikely to be bechets as it is a rare disease - I was given a follow up appointment for feb 2013!

Since then I have suffered with mouth ulcers (on lip, roof of mouth & tongue) in June which were large and very painful -lasted around 10 days.

Last week I started feeling very tired and achey.. I first got around 4 large and very sore genital ulcers and then the ulcers from June came back in my mouth along with a couple more. has been so painful to go to the toilet, eat and drink!

I also have been suffering with joint pain and feel like at an old women at the age of 24!

Went to the doctors yesterday and she thinks this is bechets - I have had some blood tests done today and she said once the results of these tests come back she will bring my appointment with the rheumatologist forward.

I have been looking on the internet and to be diagnosed you have to have other symptoms like eye problem and skin problems - I dont have either of these?

Has anyone been diagnosed with just mouth and genital ulcers and joint pain and headaches??

Look forward to your replies.

Thanks

13 Replies

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  • My understanding is that there is no specific test for Behcets.You don't have to have eye problems.The Behcet Society website has information on the criteria used for diagnosis.

  • Hi, firstly, blood tests won't necessarily indicate BD. Secondly, searching on the internet can be helpful but also confusing and unhelpful, depending on where you look. Thirdly, your rheumatologist MAY not have sufficient experience or knowledge of BD to make an accurate diagnosis. That is no criticism of him/her, it is fact that many doctors are in this situation as the condition is so rare and they may have never seen it or had specific training about it. The best person to see is someone with experience and specialist knowledge. The BD Society can recommend people. There are also now centres of excellence where Docs with different specialities, eg Immunologist, Neurologist, are all in one place, so that might an option that is open to you. I recommend that you ask your GP for a referral. Make some brief historical notes and description of symptoms. No doc has the time to read reams of paperwork, but a brief history will be very helpful as you may not have particular or any symptoms on the day. Not all people with BD have the same symptoms and they have varying degrees of illness/remission. Specialists know this. Whatever the cause,you need treatment for your symptoms so referral to someone who specialises in the condtion you may have is a good place to start, if only for elimination purposes.

  • The best way to get a diagnosis or otherwise is to see a Behcets speacialist there are three centres of excellence London Birmingham and Liverpool if you would like details please email info@behcetsdisease.org.uk

  • Hi

    I was diagnosed with Bechets 13 years ago. I suffered with many mouth and genital ulcers. I also had swelling in my knee joint. I was referred for herpes but the doctor there put all the symptoms together and diagnosed Bechets. I was already referred to Rheumatology for the joint pain and they confirmed Bechets. I have been very lucky to get diagnosed that quickly has know that some people have struggled and still struggling to get diagnosed.I am now under two specialists.

  • Hopefully you have found those answers helpful and reassuring - you will see that UK Admin and myself both recommend getting in touch with them re Specialist and Centres of Excellence and I would just like to re-iterate that from experience that seems the best way forward.

  • Yes thank you very much to you and everyone who has answered with there advice and experiences. I will email the info address later to get more info on how to get my gp to refer me to one of the specialist centres. It brings great relief reading peoples stories on this site to help me feel that im not alone. I feel quite depressed and run down atm and in a strange way it good to know I'm not the only one! I think I will be able to get some support from this site as things process. Thanks peps :-)

  • Hi Nat, I am also 24 and didn't have EVERY symptom but managed to see a BD specialist and was diagnosed, different people have different symptoms in varying degrees. It can be really frustrating, I was back and forth to the GP for many years before anything was sorted, but stress and depression I find always makes my symptoms worse. BD or not you need help and treatment for the horrible problems you're suffering from, stick with it and yes I always find it helps to make a few notes before you visit the GP. Good luck, I hope you receive some helpful treatment soon xx

  • Hi trines, thanks you for your reply. If you dont mind me asking what symptoms did you have? And now you have been diagnoised do you still get your symptoms. Did you see you BD specialist through your gp?

  • Hi Nat

    Can't help agreeing with all of the above. You are lucky that you have access to a list of doctors who have some experience with Behcets.

    I would love to have some of the money back that I spent over more than 10 years trying to get help. I hope it is OK to say this here - I used to go away from the appointments thinking "I'm having my intelligence insulted". This is after waiting about 3 months for an appointment and getting my hopes up each time that someone would recognise what was wrong with me. (And then getting told I was causing the ulcers myself or I needed to see a psychologist).

    My symptoms were fatigue, headache, oral and genital ulcers and huge crater like ulcers on my skin - mainly the back of my right calf and face. There is a very good page on the UK Behcets website describing the skin ulcers and I feel that I have had every one of them.

    I've also found this website very good. As you said it is nice to know there are others out there who are going through the same thing.

    Lesley

  • Hi I too have been diagnosed with the same symptoms as you, im now under guys they have been amazing, i now have three of the many symptoms bechets can give i was told three symptoms would give a firm diagnosis, i am now under the bechets clinic and they are sorting my meds out, it was a bit of a dra getting a final diagnosis but now i have one unsure what to do with it and what help is out there, all best to u you x

  • I have been a patient under Guys and St Thomas for around 9-10 years now and the Consultant has a lot of experience with Behcets. I see him mostly at St Thomas's at the Lupus Clinic Lousie Coote House and all the Doctors there have experience with Behcets.

    I think those Dr's that have had a lot of experience with Behcets know instinctively if it is and the blood tests are more to count out other possible conditions. We don't all have every symptom and they don't all necessarily show at the same time.

    If you do have the same consultant as me you are in good hands and he is very thorough and proactive in getting things sorted.

    Best of luck

  • Don't give up ,sometimes it takes a little while to get dianosed.you have to be your on advact.write down your symtoms each day present them to your doctors plus take pictures of your ulcersof your mouth show them to your rheumy doc.Ive heard the eye problems somtimes dont show up until later on with the disease.With me i had the famal meditterranean fever when i was younger . became full blown with everything and not dignost until i was 55 yrs old and in the hostpital had to have a lung biopsy.also askin prick is supposed to determine if you have it. the next day the skin is supposed to be red and swollen ask your doc i dont know how relyable it is.Ask about colchercen after being on it for awhile it seems to help with the ulcers .try drinking thru a straw and eat mushy foods or baby foods stay away from salts.Or if you get tired of that try this ;forge thru and go ahead and press real hot food against the ulcers;it will hurt of course but the ulcers will get used to the heat and you can eat. also try hot baths for the other or coid compress. which one feels better.Also im on methtrexate for the bone pain ,it did make a differance.Also not everyboby has the skin problems.It's none of my buisness but do you have gastro problems, maybe when you have an ulcer out break? remember nat24 your not alone with this dont give up and let go take care of it now while your young i wish i had but yet at the time i had never heard of this.God bless you many prays your way Merry christmas.

  • I think the other two apart from joints and ulcers are skin rash and pathergy

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