Quote:
Originally Posted by AnnieB3
What the pulmonology techs often do with MIP and MEP is only show the highest number. That's silly with MG. Since MG is all about fatigable muscles, showing a neurologist (and pulmonologist) all of the numbers is useful. My MIP went like this right before my crisis: -61, -55, -43, -32, -31. I was feeling horrid too. If they would've looked at only the -61, it would've looked like I was fine when I wasn't.
Annie
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Annie,
what you say here can't be stressed enough. It is the essence of MG care, and falls in the crack. From my (fairly extensive) experience neurologists basically know that the hallmark of MG is fatigable muscle weakness, but for some reason they find it hard to apply this knowledge to the respiratory muscles.
pulmonologists know how to recognize respiratory muscle weakness, but they get puzzled when it is fluctuative like that.
The net result is that your symptoms become "unexplained". And no one understands how you "suddenly" collapsed and require respiratory support, after your "anxiety" attack.
In my specific case it led to a ridiculous letter I got from a pulmonologist-she requires intermittent respiratory support and is unable to walk more then 50 meters without respiratory decompensation. her vital capacity improved from 100% in the previous visit to 110% now. (the fact that it went down to 50% on the second attempt because I was not "putting enough efforts" according to the resp. tech, who didn't even bother to mention it on her report, was not addressed of course).
and another one I recently got from a neurologist- "During the infusion of the medication she was very unwell, there was no significant deterioration in her respiratory condition but required the support of her bipap".
(needless to say that the memory card report I got from my resp. tech, showed that I was not even able to trigger my respirator at that time, in which there was no deterioration in my resp. condition).