Alice md, can you direct me to info on this? I saw a piece on respiratory intervention and tried to find a picture of it, of it in use. My brain drain is so intense I guess the 4 year old approach of pictures is where I am at.
Are you saying you have experinced 'the walls' in you chest? I guess I am not sure if I am at a new level or if possibly the myositis has gone into my chest. I will bring this up Tues. I suspect it is in other areas other than my face as a persistant pain in my left thight just below the joint and to me clearly in the muscle got better as my face did too.
Annie59
Quote:
Originally Posted by alice md
non-invasive respiratory support, means that you have a respirator, but it works with a mask on your face, not a tube in your throat.
there has been a lot of progress in this field over the last few years, with better respirators and better masks.
it has been shown to improve the quality of life, functional ability and the outcome of patients with various myopathies, and neurological diseases, . and has even been used to some extent in patients with MG.
I use one on a regular basis. there are times in which I have to use it every day and even a few times each day, and times when I only need it once of twice a week. depending on the fluctuations of this "crazy" illness.
I have a mask that allows me to work on the computer, read etc. and another one that I use when I am doing less well and covers the entire face.
without this, I would not be able to function in the way that I do.
I have been through a similar ordeal to yours, so I know to some extent what you are going through.
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