How does a person actually prove that they hav... - Behçet's UK
How does a person actually prove that they have this immune disease is there a positive test
Hi there
the short answer is that there is no absolute test to prove a person has behcets and it is mostly done by symptoms and medical history. The Doctors have to rule out everything else it possibly could be, before deciding that it is Behcets.
I have attached a link to the Behcets Society Diagnosis page which will give you the criteria that is used for diagnosis.
behcets.org.uk/menus/main.a...
It can take a long time and some of us in the good old days [as they say] didn't get diagnosed for many many years.
Thankfully, it is becoming easier to get diagnosed and more and more doctors are now more aware of the condition. Also, thanks to the Behcets Society England has 3 Centres of Excellance where people can go for diagnosis or treament.
If you live in England you can request to be referred or if not ask your Doctors to contact them as they can give advice to other doctors that maybe dealing with Behcets.
Take care
Andrea
Hi, there is no positive test. The rule of thumb is that you must have at least 3 symptoms within a period of 1 year. As Andrea has said here in England there are centres of excellence in London, Liverpool and Birmingham you just need to get a referral from your GP. Hope this helps and good luck with any diagnosis.
Hugs and Smiles
Billi
what are the three symptoms........my grand daughter has had three bouts of an ulcer since last summer but no other symptoms......
The link I gave you above will say the full basis for diagnosis but as a basic rule this is the criteria
Must have:
•mouth ulcers (any shape,size or number at least 3 times in any 12 months)
Along with 2 out of the next 4 ‘hallmark’ symptoms:
•genital ulcers (including anal ulcers and spots in the genital region and swollen testicles or epididymitis in men)
•skin lesions (papulo-pustules, folliculitis, erythema nodosum, acne in post-adolescents not on corticosteroids)
•eye inflammation (iritis, uveitis, retinal vasculitis, cells in the vitreous)
•pathergy reaction (papule >2 mm diameter, 24-48 hrs or more after needle-prick)
There is a lot of other if's and but's to this which are noted on that link and so if you read it, it may help
Andrea
They could any of many...ulcers orally, ulcers vaginally, skin lesions, eye problems, joint pains and more. Having had 3 in a period of one year. You really need to see a GP and get referrals to a rheumatologist. But you must remember that a lot of autoimmune diseases have very similar symptoms and it is extremely important to get the correct diagnoses and treatment. Getting a diagnosis can take quite a long time and involve lots of hospital visits tests etc.
Take care and let us know how you get on.
Billi
Hello,
Just to add to what others have said--
in terms of bloodwork, I was finally diagnosed through the genetic marker test for Bechet's. My rheumatologist was quite sure that I did have it just based on my clinical presentation (i.e. skin rashes, lesions, ulcers, and joint swelling/redness I had that day); my symptoms; family history (many different autoimmune diseases run on my Mom's side of the family); and by ruling out other diseases (also I had no positive tests for autoimmunity like lupus or RA because no autoantibodies were ever found in my blood-- this is what makes Behcet's Disease so strange and unlike any other autoimmune diseases)-- but he wasn't able to offcially diagnose it until I tested positive for the genetic marker (its called "HLA-B51"). Only thing is that I live in Canada and I think we have different "rules" for diagnosing Behcet's. Also, I have read in many different journal articles that some people with Behcet's may not actually test positive for this gene (just as how some people may not have a positive "pathergy skin test"), and that there might actually be other genes found on the "HLA" strand that are also involved. Another thing is that this genetic marker can also be found in healthy individuals, as it only increases a person's risk of developing Behcet's. I think my rheumatologist may have relied too heavily on this test as a diagnostic tool because he didn't know much else about the disease, and was probably wanting some kind of physical "proof" of the disease before he actually gave me a final diagnosis and began treatment.
I just wanted to mention this test, as it may be helpful in getting answers if every other disease is coming back negative and no autoantibodies can be found in the blood or tissues.
I hope that you and your granddaughter get some answers soon and take care 
-Jenna
Hi Croal hun,
The people who have answered you above have all given you super advice on how BD is diagnosed and where to find information.
What you need to do to obtain a diagnosis is to prove that these symptoms have existed over a period of time which can be (as someone has already said) as long as a piece of string.
On a very practical note this means that you have to keep a comprehensive diary of any little thing that appears like ulcers, bruises temperatures, odd fevers and absoloutely anything which may seem totally unconnected but may all mount up for a professional to link together and reach a diagnosis for your grandaughter.
The best way to do this is by keeping a daily record over a pretty substantial period of time (a year plus) and taking pictures and writing a very detailed log of what actually happens will help tremendously and gain you a diagnosis much sooner than most of us have achieved.
Good luck Hun and I hope your grandaughter is feeling better soon. Please read this forum regularly to see what other people say and pick up tips which can be very educational as time goes on. The more you understand and learn about BD the easier you will find to cope with it all.
Take care, ttfn bug hugs xx
There are lots of other clinics too with experts if you live away from London, Liverpool or Birmingham.
