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.

My daughter has tried to help and we have discussed her doing so. But she just started to help with all this the beginning of the year. She has been playing catch up. She doesnt know many things. She is also a good person and just doenst realize how bad these docs can be. She is near 40 and is a good business woman but in this context she is too nice.

I have no men in my life that live close. My brothers are on opposite coasts. My sister is 12 years younger and is pretty buried with a full time job and our mother to take care of. There is this deafening silence with both my daughers since this disaster of an appointment so I know there is big feelings going on I just wish they would share. My oldest said we'd talk but it hasnt happened it. When I said in the car afterwards if only I had money, she said what difference would that make. I surprised that she didnt get that that was what is always gonna keep me from getting to a bigger medical center in say Kansas as was once suggested to get truly worked up in a fresh way. And get that that is pretty much were we are at since the University were I go I feel is so tainted I dont think I am ever gonna get much more from them. My internist gets this too which is why she wanted to send me back to Mayo. I dont think she remembered I had been there.

Brain and eyes failing so gotta go but wanted to start this subject as I dont think I am the only one that has that has some of this going on. The fear my daughters have is a big roadblock to getting them into now so they can fight with me to get me treated.

Annie59

[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