Hi Annie,
I was actually kind of hoping you'd pipe in.
The neuro-opthalmolgist is a really good thought since that's mine one sign that is very consistent and the droopiness, at least, I can usually bring on by squeezing my eyes together.
I've got referrals in the works with Dr. Howard and Dr. Richman (in California). I am understanding what you're telling me about going to an expert and not fooling around! I do have someone that's supposed to know about mg that I'm going to next week in Seattle. But you know what? The woman I spoke with at the MG Foundation mention a great neuro opth who works with mg a lot too. Maybe I should get on that. I feel a little like a hamster on his little wheel right now - trying so hard and not really getting anywhere.
It's great to get your feedback about how mg appears in an exam. Thank you! The neuros seem so sure of themselves. My experience has been the less the know the more sure they are. Ugh.
Anyway, thank you again for your good thoughts. As my son would say, "you rock!".
Ally
Quote:
Originally Posted by AnnieB3
Hi, Bluesky. I'm not any of those people but I'd like to comment if I can.
I think you should see a neuro-ophthalmologist - a good one. What you went through the other day with your eyelids not staying up is both scary and clinically obvious! I would think you could get an N-O to document that for you.
You need a different neuro too. This guy sounds completely out of his league. You can have a completely normal neuro exam, go out and run a couple errands and then be really weak. MG is weakness upon EXERTION and one or two reps of something doesn't necessarily weaken all muscle groups. MG is not predictable that way. A good neuromuscular neuro will test all muscle groups. There's even a test where you can go up and down on a couple stairs and they see how long you can go. Again, the more thorough, experienced neuros do those kind of things.
And yes, you should probably have an RNS, EMG and SFEMG by an EXPERT. Don't nickel and dime yourself by having one here and one there. It's too exhausting and expensive.
You need help and soon because it sounds like you are getting worse. Keep taking it easy, okay?
Annie
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