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In a message dated 98-06-26 21:04:22 EDT, you write: > --Is there some way I could have, or still can, handle my involvement with >my >current medical providers more effectively to have my concerns addressed? I >see my internal med. doc. Mon. to update her. How do you suggest I discuss >this with her? > --How can I make sure that Mayo is not a repeat of the fragmentation I've >been experiencing? I'm certainly willing to see as many docs there as they >want to have me see, but how do I get someone to look at details & integrate >the findings? > --I don't know what else to ask you, but would be grateful for any ideas or >thoughts on any aspect of my situation you'd be willing to send me. > > Dear M. Dawn, I hear your frustration which at times must border on rage. Your expectations are more than reasonable but finding the right person to read all the "tea leaves" may well be the exact problem. How about this for a plan.... since you are going to see your "internist" on Monday, let's designate her as the one who will help to pull it together for you. Let's also figure that she can't do it since she (and all the others) haven't been able to do it so far. Sooo, appeal to her frustration. Ask her, right now, to offer her best ever analysis of what's going on - allow for a statement which says "this is quite complex" and "from the point of view of internal medicine..." but go for her simple and direct analysis. (Incidently you can also do this with each of the other people on the team. The wish will be for one of them to do the intuitive work on the spot. So what happens if you get one or several wise and also intuitive opinions each with a reasonable plan of action, and the opinions differ? This is where it gets interesting. You can go back to each of them and with the same face-to- face directness ask for their new integrative analysis based on a very brief and direct summary of the other opinions. Option #2...do the above with the internist. If she is stymied or whatever, appeal to her desire to get this pulled together. Pause. Introduce the idea of Mayo. Pause. Introduce her idea of having your case presented at Grand Rounds. Let her decide the best discipline to host the integrative endeavor, and tell her casually that this will eventually make for a nice letter to the New England Journal of Medicine. (With the Mayo Route, let them only do one evaluation with no more than two people involved. Their task is to do the integrative work. The "two people involved" brings a little money into their system so administration doesn't question anything, but the real challenge will be to find the right person to "chair and convene.") Make sure you get a report from them with major opinion and dissenting opinions and if possible obtain a videotape the conference afterwards. Don't draw attention to that. I'll leave the rest up to you. Please let me know if this is helpful and if it holds any promise for your further efforts. BTW after all this is done, sit down and do your own intuitive and integrative analysis and come up with a plan of action that will help both you and your son. Tim --- Tim Hodgens, Ph.D. Westborough, MA