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.