AnnieB3, He, the doc, whipped out the thing and sprayed it up my nose heavily before I could question it. I agree with you that it a time to be conservative. This was in my thoughts last nite. They actually scheduled me to get both the MRI and the swallow in the same day!! That is 2 or 3 new chemicals going into my body not to speak of the stress of the claustrophibia. I wont do it the way it is shceduled as I am clear it is a bad bad idea. The doctor asked if I had been tested for a version of ALS. I said I didnt know.
With my younger daughter with me it was harder. While she took basically good care of me she at a certain point started in some 'gently' on her agenda which is not the same as my older daughters. My older daughter has tried to to get the yonger one to come with and see how bad I get, I am. It became obvious that her not having experienced as much makes her a hindrance in an appointment. She needs me to be better than I am and have an easy answer like just eating more. She first went into pushing me about how I wasnt explaining how it felt and she couldnt understand that not being able to swallow or talk or breath normally could be pain free. It made no sense to her.
I have the goal of resting and recovering today. I took a higher amount of mestinon last nite which did allow me to get to bed. I know I have to slow down on the risks I take which is basically any doctor appointment or test. I sure wasnt expecting him to scope me there on the spot. He is my grandduaghters ear nose and throat doc which I didnt realize till on the way and my daughter realized where we were going. He was nice, quiet guy but perhaps cavalier with his actions.
Annie59
Quote:
Originally Posted by AnnieB3
Annie, You've read the list of contraindicated drugs for MG, right? Any anesthesia would make MG worse. If you get so bad that you can't swallow, can't breathe well or can't move, you need to dial 911. The effects of it can last for more than simply hours. You could feel even worse in the next couple of days. You have to let a doctor, like your pulmonologist, be aware of this.
And as far as the contrast for an MRI, it is usually Gadolinium. It is absolutely NOT necessary. That contrast has caused significant reactions in some people and, in some, it can cause permanent kidney damage. You can ALWAYS refuse a drug.
Blindly following "doctor's orders" can kill someone with MG.
When you have the swallow study, you should have someone drive you. And stay home with you afterwards to keep an eye on you.
This is not at all funny. You are in bad shape and not getting good care. What is going on with you has not been completely defined or thoroughly treated. By taking any drugs like this right now, they are putting your life at risk.
I hope you will get better. If you don't, you HAVE TO get help. And not here on the internet but in the ER.
Annie
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