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Hi there, if you are treated with chronic ventilation (mostly not fulltime, but you always have it in your reach and use it when you need it), can you help me?
How does it work for you? (1)
Does it give you more strength / energy in general? (2)
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I have been on intermittent respiratory support for nearly 5 years.
It led to significant improvement in my functional ability and quality of life.
It did take quite a while to find the optimal respirator and settings.
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I often have periods where I'm "near crisis" (though if docs didn't know I have this so very often, they would say it's a MG crisis). It means I have general weakness, mostly eyes to toes. Of course not all muscles are affected evenly, but still the only thing I can do is lay there, wait till it's subduces and not so very much else.
At those points my breathing problems get worse; not so much it will kill me or won't be managable with those nifty body systems, but still I do not get enough O2. I HATE that feeling the most: the feeling I can't breath. My diaphragm feels tight and like it's hard rubber; no way to expand (breath in) as much as I need.
Do you recognise this? (3)
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Yes.
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At this point, if I use it: will it only help my breathing, or will it also give me more strenght in general? (4)
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With the proper settings and use you will have both support in your breathing and less feeling of suffocation and overall improved sleep and strength. ( Don't expect to run the marathon, but you will do better).
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And what will it do if I use it at not so bad moments, but when I'm "just" out of breath? (5)
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With time you will learn when and how to use it, just like you know when you should eat or drink.
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Does it give you more strength in your diaphragm? Does that feeling where your body tells you: "do not move or you will pass out" go away? (6)
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Yes, yes and yes.