Quote:
Originally Posted by teresakoch
Maybe it's because you "rest" before you see your neuro....
I've found that I have to schedule my appointments in the late afternoon - if I go first thing in the morning, I'm not tired enough for my symptoms to be noticeable.
And maybe you should take a walk around the block right before you see your neuro (or whatever it takes to "wear down" your muscles). Don't do anything that will land you in the ER, but enough to work the adrenaline edge off.
No matter how good a doctor may be, unless he/she actually HAS MG, there is no way they can fully appreciate how we feel. None of us could have understood it until we were the ones experiencing it ourselves - it's still hard for my family to understand, but they're getting better (of course, I'm getting slightly worse, so it's more visible).
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So true!
My trip to the appointments:
taxi ride 1,5 hours long (most of the time I get so tired I fall asleep for those 1,5 hours. Then waiting (sitting on the chair) for the appointment, most of the time I have to wait at least 30 minutes, sometimes an hour. So it's a lot of resting, sitting, doing nothing before I go inside.
And you're right, only someone who actually has it, knows how it feels.
I'm getting worse too, so for me it's totally visible know. My facial expression is gone and I walk funnily. I don't get to see my neurologist in 4 months though...
@Jomamma: well....good for you. But being weak and being MG-weak is not the same. But good news you're doing better!