Quote:
Originally Posted by AnnieB3
Call your doctor!
I don't like what you're saying - being so lightheaded is not normal. Please get someone to see you. Did they ever do a cardiac workup?
Pred should be helping. Are you on Mestinon?
The balance of drugs with MG is more like an art than a science. Too much can make you feel worse. But my gut instinct is that something else is going on with you. Especially given that one reaction you had to plasma.
Sometimes MG is like this. You can go through bad episodes. Did you go on that trip? Maybe that made it worse.
When I was on steroids, my pulse dropped very low. Can you check your pulse? Steroids act differently on everyone and can have weird side effects. It's always good to have a doctor check on you after you start a drug too.
I hope you will get to feeling better soon.
Annie
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Annie- Thanks for your help. I called my neuro earlier today, and he didnt call back with an answer. My neuro at UNC (different than my regular) started me on 20mg, (4pills) a day, when i had my crisis. He thought thought with the plasmapheresis and pred. I would be okay on a low dose, so i was in the hospital.. but i went to see my reg. neuro the other day and he said he wanted me on a higher dose.. so he is getting that in place..
I am getting tested for anti phospholipid sydrome tomorrow i believe, so maybe that will bring new answers out...like i said its not all the time that i feel like that, but once or twice i day, i get really dizzy and feel ike im going down..
They did the blood pressure when standing and sitting, etc, and an EKG. but nothing else cardio related.
I still have a pretty droopy eyelid with the pred, which is weird.
I havent gone on my trip yet, I go thursday, and hope it goes well. Im bringing a print out of everything i that i need in case i go into crisis while there, for in Maine, there isnt much for MG help.
Thanks for your help!
Hope your feeling well