I have been on this forum for a couple of months, and learned quickly that this is based in the UK. I'm over here in the States and can't help but notice all of the different treatments that people post about! I was diagnosed at the age of 7 back in 1980, but have had symptoms since birth.
I have had joint problems, eye problems, stomach issues and mouth and genital ulcers. During different stages in life some symptoms have been worse than others. As a very young child I had awful joint pain and mouth ulcers. As a pre-teen/teen I had horrible genital ulcers (and mouth ulcers). Currently my most frequent symptom are mouth ulcers.
Over the years I have seen pediatric specialists, infectious disease docs and 3 different rheumotologists. My rheum. now seems to think and act as if my mouth ulcers are an inconvience and suspects me as a drug seeker. When I have a flare up of ulcers I call my primary doctor who prescribes a Solu-Medrol dose pack and Vicodan, as my rheum. does not. I am fortunate to have a compassionate primary doc, however he does not have experience with Behcet's, except with me.
I have been so amazed with the different treaments that are used in the UK, especially for mouth and genital ulcers. Low dose nicotine patches, inhalers, doxycyline mouth rinses, topical steriods. NONE of these have ever been brought up, ever. I mentioned once to my rheum. about topical steriods and he shrugged and said it isn't typical to use that. I feel like he doesn't keep up with new research.
How do I bring up these findings with out sounding like the nutty lady who cruises the interenet looking for cures? I want him to know that there are treatments available that we haven't explored. I've succumbed to the fact that I'm not going to be cured and sometimes not even controlled. But I would like some treatments that help aleveate the pain and inconvience it has in my life.
Any suggestions on how to bring this up to my doc without sounding defensive, ill informed, or plain old crazy?