Sounds like you need a new Neurologist. For a year and a half, I kept a diary of activities and responses. I also noted emotional stress, physical stress as well as foods in my diet. It was a roadmap of my life. It helped my Neurologist understand what was happening. Weakness is a daily issue. I had to sell my business and can't work. I am not dependable anymore. I can do some physical activity for 30 minutes and then rest for an hour. I have noticed that emotional stress will cause MG symptoms to worsen for several days before I start to recover. Heaven forbid I should get angry! The old saying " this is going to hurt me more than it is you" when parents were going to discipline the kids, well now it is true. Stress, frustration, anger and other emotions hurt us that suffer with MG. I had never heard of MG except from a medical text book until 2009. The more I learn about it, the more I understand my body and how to change my life to make living with MG more tolerable.
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Originally Posted by RavenC
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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