When you do see the doctor, I find it best to have a simple list
of your symptoms to give him. Not just todays symptoms, but symptoms as they appeared over the the years (and if they were treated, with what and how did they respond).
If you feel it necessary,you may also take a list of what drs you have seen. DO NOT go in & recount each dr and how they have done you wrong. (Don't give them this list unless they ask for it.) This tends to waste the drs time and make him/her loose interest in you, the patient. You don't want them as therapists or commiseraters, you want them to see the symptoms and match them to THEIR education on symptoms and treatments.
Similarly, don't mention what diagnosis you think you might have. This tends to make the dr look precisely at that dx and determine a yes/no for that disease. Again, you don't want them to narrow their focus -- you want them to mentally consider EVERY dx they've ever learned about
and how it does or does not fit your symptoms. I find mentioning a disease narrows their thoughts (even with the best drs who don't mean to, its the human power of suggestion.)
I'd also like to suggest 2 things -- 1) could you both try to put some paragraphs in your posts? I find them hard and difficult to read without the paragraph breaks, and most of our members also have issues with eyes & concentration. You might get more support this way. -- 2) Could you talk about
things that are helpful and supportive sometimes? Everyone here is ill, string to heal or at least to find ways of coping. For instance, does some of the pain recede with ice? Or heat? Was your day better because x, y, or z happened? Did you manage to enjoy a laugh with someone for a minute or two anyway? I don't mean you have to be light or airy in dire circumstances, but try to put your mind on positive things -- it really does help us feel better.
Hope you both feel better soon,
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde