I finally plucked up the courage to ask my GP for a referral to the COE. But when I asked for information re costing (the only fee published on the website is for follow up appointments), the fee the initial appointment works out to be extremely expensive.
I have looked up the criteria on the factsheets & know I dont have "open & shut" Behcets (only one case of genital ulceration, no uveitis). My symptoms are as follows: recurrent mouth ulcers, recurrent vulva inflammation, x1 vulva ulcer, severely dry eyes (but -ive SSA/SSB/ANA/RF & normal inflammatory markers), recurrent nose "sores", fatigue (in my 20s but cant work full time or socialise), joint pain, fibromyalgia, flu like feeling with transient fevers, Raynauds, rashes (purple spotty one & ?folliculitis one, but none of them severe), oesophagitis/gastritis, unintentional weight loss).
I am worried that I will spend thousands only to face the same thing as at home - a shoulder shrug!
I can see from the criteria that one doesnt need the have all of the signs/symptoms simultaneously but at how do they decide to diagnose a patient with Behcets if the patient doesnt have eg the rash in front of them? Have tried showing the GP photos but am met with a blank stare.
I realise you guys are not clinicians but I dont have anyone else to ask.
Being sick is so expensive.....
Feeling overwhelmed, any advice gratefully accepted.
Hi and sorry for your dilemma after all you are going through with your symptoms aswell.
Firstly where do you live and if in UK why do you have to pay? Your symptoms sound like most of us and none of us are the same. you need to take photos of any ulcers, rashes etc. you also need to take a diary of all your symptoms, feelings, pain, everything. Take all this with you if you get an appointment. Also ask your doctor to give you a letter of what he has seen etc. any information with the slightest connection to your illness.
There is no cure for BD or definitive diagnosis but at least they can rule it out and point you in the right direction and if they are unsure they will help and treat you. It is a wonderful setup so you mustn't worry on the medical side.
I do hope this helps and I. Sure others will respond to you.
Take care, stay strong
Hugs
Billi
Hi, yes, who said you have to pay?? My daughter attends the COE in St Barts London, she was referred from our local hospital after not being satisfied with the treatment to Hammersmith hospital, then referred again from there to COE where we have been going now for a few yrs, cant fault them at all, she even sees a physiologist there, but you do have to be referred by your hospital or gp. Xx
I live in Southern Ireland, which is why I am an international patient & have to pay. Its 2,200 in euro (plus flights) for the initial appointment.
Just afraid I'll spend the money & still not get anywhere. My only diagnosis up until now is fibromyalgia.
Hi ok so this is the best advice I can give you. Behcets is often called a disease of many disease, in other words it mimics many similar diseases. In general it takes 12 years to get a diagnosis although improvements are making the journey to diagnosis much easier. There have been many changes since my journey began and many more doctors know of BD, there are many more meds available, the Centres of Excellence in London Liverpool and Birmingham and the Behcets Society and this site. I am telling you this so that you can make an informed decision. The centre will help and set you on the right road but there are no difinitive tests and you may need to have many appointments. Could you do some research online as to doctors in Ireland who may have knowledge of this disease?? Probably Rheumatologists are the best place to start.
I know how you are feeling believe me but this is a long journey and even now many of us still do not have a full diagnosis. We hear terms like ruling this and that out and well these symptoms don't really fit the pattern, she is doing ok (can't be BD) never seen a patient with this type of lesions etc. etc. so if you think it is going to be a magic wand....it isn't....on the other hand you may get some good advice and treatment whatever the diagnosis.
I'm sure this isn't what you wanted or needed to hear but ultimately it is your decision as Behcets Diagnosis is of ruling out rather than ruling in so can take quite some time. You need to do homework on doctors in Ireland, perhaps finding others in a similar situation and getting in touch with the Centre of Excellence and the Behcets Society or another charity, perhaps for advice of funding options.
Whatever you decide please keep in touch with this site as I. Sure you will find some answers and certainly support. Please let me know how you get on.
Hugs and more
Billi
Thanks Billi, this is really honest & helpful advice.
I think I was hoping that the COE would be the answer to all my problems but you are right, I need to be more realistic.
I have already done a huge amount of research online but come up with nothing. I have seen a Rheum already who said I have fibromyalgia & that Behcets is rare ergo I dont have it.
Trying to find a balance between getting specialist advice & not putting myself under too much financial pressure.
You are welcome and I just thought you needed to know the facts before making your decision. Two points I have learned...1) my first Rheumy told me not to worry about the actual diagnosis per say as long as I was getting the best treatment...2) whatever your illness is try not to think of the worst scenario instead put all your efforts into staying strong, being positive and living your life as normally as possible. The field of medicine is improving all the time and certainly much improved since I caught this disease. Do keep looking on this site as it is a minefield of info on all kinds of illnesses, treatments etc.
I would love to hear how you get on and wish you well.
Billi