International referral to COE advice please

[sopainful]

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.

[billi]

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

[tamirra in reply to 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

[sopainful in reply to billi]

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.

[billi in reply to sopainful]

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

[sopainful in reply to 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.

[billi in reply to sopainful]

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

[andreafm]

Hi sopainful

It frustrates me that people like you have to worry about finding funding for things like this...we are lucky in England to have access to the COE

If you email the Behcets Syndrome Society on

[e-mail]

They can send you details of Doctors with Behcets Experience who are based in Ireland, which might work better for you at first, before spending money on coming to COE.

There have been a few discussions on here before about Dr's in Ireland...I have linked you to a couple

healthunlocked.com/behcetsu...

and someone else posted this link up of a Dr Wright in Northern Ireland but couldn't tell you what he is like and so you might have to investigate for yourself

arthritisnorth.com/patienti...

There's also a Facebook Group for the West of Ireland that might be worth looking at and asking them

facebook.com/BehcetsGroupwe...

Hope some of this helps and wish you every bit of luck

[sopainful in reply to andreafm]

Thanks for all your advice Andrea. The West of Ireland doctors wont work as public hospitals wont accept referrals from outside of the cachement area ( I live in the East) but I am checking into Dr Wright's clinic.

Dont know what I would have done without this forum.

[Hidden]

Hi sopainful,

I can truly understand your plight having been from one end of the UK to the other ( I live in Scotland ) to try and get a diagnosis, the best I have managed to achieve is " possible Behcets ".

It is a truly enigmatic disease and because it is primarily a clinical diagnosis it is not one that Dr's give lightly.

I have paid for private opinions in the past to " hurry things up " and have then been under that Consultant via the NHS. The practicalities of the situation are if you manage to get a diagnosis of Behcets from a C of E who will then manage the disease for you? Would you envisage a local Rheumatologist accepting their diagnosis and taking over your management from there or would you expect your local health authority to then fund your treatment and drugs at the C of E?

I say these things not to put you off. To a certain extent we are in the same situation in Scotland as the C of E's are centrally funded for England and it's the local health board that has to foot the bill for attendance and any treatment plans.

I hope you manage to explore Andreas links above and that something positive comes out of them. It is truly awful that we have to fight and push for answers at a time when we feel so unwell and least able to. The thing that keeps me going is the words of one Dr who said to me once that she used to work in a Hospital who took a very collaborative approach and all the Dr's sat in on each other's clinics. They did so because when patients were a bit " complex " all it took was 1 Dr to have seen 1 other patient with similar symptoms before to help solve the riddle. I am still looking for that Dr, good luck in your search for yours.

[dawnie2750 in reply to Hidden]

Hi keys.. I am scottish.. and looking back through my gp notes since birth it was evedent that something was up with my immune system.. I moved to England 11 years ago.. and believe it or not the trauma of pregnancy brought on my behcets so much worse than before.. when my son was little over a year I was diagnosed with herpes!!! which I flat out said no way to.. lucky for my I had a good rapore with my then gp.. who sent me to the gum clinic and it was a lady called sandra who asked all the right questions.. where I was answering yes I do.. who said the words.. I think you may have a disease called behcets syndrome..

I had several cases of itchy skin.. always mouth ulcers.. tonsilitus.. dry eyes.. ulcers up my nose.. cold sores.. sore joints.. even a scare with scarlet fever.. and my first bad scare in hospital when my son was 6months old.. my blood count was 400+ I lost four days to that.. and still the scottish hns system did not very much!!!! I totally feel your pain...

I have a consultant immunologist from Newcastle who sees me every few months.. more or less depending on how I feel.. hes amazing and has really helped me keep my even keel!!

I hope you find the help you need..

Big hugs dawn x

[sopainful]

Thanks Keyes. You make a good point re whether a local Rheum would accept the diagnosis (if I get it), and this is something I am anxious about. My GP was very happy to make the referral for a Behcets opinion but I'm not sure that she has a clear plan in mind either. I'll let you guys know what I decide & in the meantime will try to accomodate myself to the idea that I may never have a definitive diagnosis.

[Richard12]

Hi So Painful.

Sorry to hear you are having difficulties with your access to treatment.

I would suggest that you have a look at this little known piece of EU legislation.

hse.ie/crossborderdirective/

Here is the Eire stance on it

oireachtasdebates.oireachta...

It might be a battle but people living with Behcets are used to doing battle.

I think it would be worthwhile trying to go down this route and see what they say.

If you need help let me know and I will try and help.

Let us know how you progress.

Regards and good luck