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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hi there, Im new here.
I have MG for over 3 years now. I want to ask of someone recognises this: At home, I have times of severe weakness. Most of the time, I'm weak, when I did something it causes weakness. Breathingproblems, not being able to walk, weird speech and so on. However, I never seem to have this degree of weakness on my appointments with my neurologist. I hate this, because this way I feel like I'm exaggerating. Like my neuro is not taking me seriously. I do believe the reason,is because I get most of my weakness when I can relax. And at those appointments I have loads of adrenaline rushing through my body. the adrenaline is sort of getting me through it. Does anyone can relate to this? Doctor describes it as "well treated" but I disagree... But my muscle weakness isnt very prominent at the appointments so I get where he's coming from... Anyway, I gave an usb with 2 short movies showing, trying to "convince" the doctor I do still have loads of weakness... Maybe you guys can also take a look and give your opinion: do i look mg weak? I have the feeling Im not taken seriously. |
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