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Old 03-07-2011, 06:57 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Don't doubt your diagnosis!

Do you want to see the bruises and cuts I get from being off balance? I think the walls and doorways have more though. I don't have as pronounced a girdle/trunk problem as you do but it's there. Just like some MGers have more swallowing/choking problems than others, I'm sure there are those who have more issues like yours.

It might be that MGers tend not to talk about those things. Think about any appointment you've ever been to with a neuro. Appointments are short, they don't necessarily remember all of the details and neurologists often go straight to "What treatment do I give now."

What position do you sleep in? Do you tense up while you sleep? Have you had a spine MRI to look for nerve problems? Have you had your B12 rechecked? There are so many other things that could contribute to those muscles of yours being weaker, including the fact that you simply have that "type" of MG.

I tend to get progressively weaker and, if I don't rest, then I crash. Everything gets very weak. Think of a drawing of a bell curve or a hill. I'm fairly steadily horizontal at first, then I go downhill slowly and then I completely crash, ending up at the bottom, lying there waiting for strength to return. I'll bet doctors don't think about MG in those terms. And Alice, if I can use her as an example, seems to start way down the hill and then fall off a cliff if she does too much. Please correct me if I'm wrong, Alice! I have to add that my speaking muscles are usually spared because I don't talk much during the day. Those who talk more, well, have trouble with those muscles.

Does any of this help or am I babbling?

Annie
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