Hi and thank you to everyone who posts and responds to posts on this group. There is no doubt that peer support and info is so very important - keep up the fantastic work - you are all amazing people.
Yes thank you to you for the great posts..I rush out with another idea as to how to make things a bit better..and the stories of all the courage . My doctor told me that whatever I had he will not admit to betchets...he said it would make me truly miserable....
he said it with a smile and real pleasure....
and these posts show what resolute guts you all have..and I think the doc has not understood the human spirit.....thank you
i am the mother of a behcets patient. i thank God for this site. i still dont know how my son and the rest of yall do it. he has the hla factors b51 and b57 and a rhuemy that knows behcets. he gets good pain meds but still not good enough.(cant stand to hear people not getting pain meds and it is getting rough here in the united states with the drug enforcement agency) the drs want to give him more pain meds but there is a "morphine equivalent" that he has reached that flags the doctors to the attention of the drug enforcement agency and then the doctors get scared and in trouble. i cant blame the dr cause he could lose his liecense even though he is not doing anything wrong. the pain management dr i took him to said he should just stay with the dr that is giving him the pain meds or move to another state where the drug enforcement agency isnt as active. wtf
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