Really, really discouraged

From: Christine M. Smith (
Thu Oct 21 08:09:36 1999

Hi Everyone: I really am happy to read the posts from people who are working with cooperative doctors searching to find them relief. It amazes me the number of narcotics some are given which means that some doctors are taking adhesion pain very seriously. It also makes me wonder what I am doing wrong as I continue to have no answers to my problem or to my pain. The first problem seems to be a doctor who doesn't remember (and can't seem to find in his notes)how the last appointment went. At my last visit I was doing pretty good and told him so (and the reason why I thought so). I also told him I was frustrated because I had been to at least 6 different doctors and still had no answers. (he nodded sympathetically, as if to say all those doctor's opinions weren't his idea) I went on to say that the general concensus seems to be that I have sacroiliac inflammation referring pain to the pelvis. Yet no one has documented this inflammation, although several suggestions have been made as to how to do this, and no one cares *why* I have this inflammation. His answer was that just about everyone who comes into his office has at least one problem they don't know the cause of. He feels that I have had adequate workup (more so than anyone else would have done he was sure) and that the crises should be treated as they come up. He gave me an appointment for 6-12 months, adding of course I could call at any time. He doesn't even want me to take the celebrex on a regular basis because he is sure "they" would balk at the expense of using the drug in someone like me. A few visits ago I told him this problem was ruining my life. I might have impressed him at the time because he sent me to the pain clinic, but obviously he has forgotten. When I mention that I'm not in severe pain where I can't function, but its a quality of life issue, he says he understands completely. The pain clinic, while looking promising at the time, turned out to be a big joke, with the doctor giving his recommendations to the pcp who then ignored them. Had I known it was going to work this way I might not have agreed to go, or if I did, made clear my expectations before hand. I just assumed I would be treated by the pain clinic because the pcp didn't know what to do next! With my form of managed care, a specialist can not refer to another specialist but must go through the pcp. What I think is happening is that the pcp doesn't agree with all the other opinions (he actually thinks its the adhesions, but doesn't offer any treatment for them)and he is hoping that in time a crisis will come up that will either prove he is right or provide some more clues. Meanwhile, where does that leave me? I feel like I've been put out to pasture. Other than the obvious, and that is to find another pcp, does anyone see any solutions to this exasperating situation? I know I could call them up, give my concerns and complaints to the nurse, and all she is going to say is well, then you'll have to make an appointment and come in to talk to him, and round and round we go again. Finding another pcp scares me though because 1) I basically like the pcp and I've been to enough doctors to know that this isn't always the case and 2) there are no guarantees that I will find anyone who will do anything differently. Yet I look in the phone book and on websites and see what appears to be what I need. Its a gamble and could be an expensive one. Medical care in the U.S. is supposed to be the best in the world. Accessing it is another story. Sure is frustrating and depressing.

Chris S.

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