[QUOTE=Annie59;715428]I have rested and thought and read the suggestions over the past days. Now I'd like to tell you some of what I have learned, what needs addressing. Firstly the point Bluesky made, acutally several points around how to deal with docs is beyond me at this point. While I can write here in a slow and piece meal fashion appointments arent like that. I was a bit like a firing squad Tuesday with the student docs I saw first insisting I had to talk thru my history rather than use the health history I had typed up with great care about 45-60 days ago. I know it was supplied to them as my internist liked it and took it and the pulmo testing from Mayo and eye testing that said MG in her hands from the room to do the referral. There was a million ways the docs shut up or shut me down. Between my talking issue (breathing) and my cognitive issues that were shown to be literally slowed thinking I cant go to bat with these people. I have been trying and it just ends up confusing things.

Annie, you make some really good points here and this is how my appointments often went too. I too have a lot of brain fog and difficulty thinking fast which is really frustrating since that used to be something I was really good at. My points are definitely not sure bets because docs can shut you down very quickly and they have a lot more power to dictate how they want the appointment to go. I look on my strategies as improving the odds, that's all.

My case, and probably your case too, is so complicated that at this point I have no one who has anywhere near a grasp on the situation except for me. That's too bad and I think that's a problem for a lot of people. I wish there were volunteer advocates that existed to help us pull all of this together and talk to the doctors but there's not.

Hopefully, other people will have more suggestions for you.

A.

Oh gosh yes isnt that so crazy making when a person used to be so fast-thinking and multi-tasking and not just getting a tub of sour cream out of the frig and the plastic fork and chips to eat is something that takes such devoted concentration as if a test.

Alot of bells came on for me from your post. Like the only black and white. Your dying or your fine. At the beginning the student doc asked for an over view of my health and to my dismay my daughter did a half laugh and started to talk suggesting what an over whelming thing that was. She had no idea that not being as concerned even scared on the surface as she was on the inside was the better place to be. The real feeling. She did decend into that at the end with the senior doc several minutes into throwing my major symptoms down the toilet. The point here is that when you go in you cant be a nice human being that may smile and try to lighten the mood even maybe just for your own survival as my daughter did and I had done in the past. It back fires and gives the impression that you can easily go home cause you are managing. At least that is what is seems to me.

Annie59