Iv been having a nosy at blogs and questions etc, and the one thing I keep coming back to is that not one of us has a clue to the extent of the disease we all have...
Although GPs try.... lets be honest anyone with behcets has scrawled the internet within a few months of possible diagnosis and probably knows more than any 'normal' GP!!!
What we need (behcets patients) is a specialist.. to tell us that we are doing ok, and if we are not how we can improve our quality of life,, because this disease isnt quite curable yet!!! and its all about how to improve our lives to live with this disease.. and manage the pain and the 'flare ups'
I honestly cant imagine how different my life would be if it were not for my specialist, who is there to make my life easier and to cope with the 'sometimes' every day struggle...from using a steroid inhaler like bonjella, to using clochicine that is not for gout.. and especially an std antibiotic as a mouth rinse!!! he is an amazing man...and not scared to experiment on me!!!
EVERY SINGLE BEHCHETS patient should have a specialist!!!!!!!!