Quote:
Originally Posted by jana
I've been pondering -- and trying to make sense of this. CANNOT -- my brain is either TOO small -- I'm in a really THICK fog -- my MG is really WEIRD -- or as we say in the South, something "ain't gee-hawing".
"A very easy test to perform on your own, if you experience any of those symptoms, or have concerns of respiratory muscle weakness, is to take a deep breath (as much as you possibly can) and then try counting, with taking in air again.
A normal and healthy person should be able to count to around 50, being unable to count more then 10 is usually an indication for respiratory support. Anything in between will suggest some degree of respiratory muscle weakness." (From Alice and Moshe)
I've done this test a LOT of times recently -- and the most I've gotten up to is ELEVEN!! But. I feel fine -- I'm not even IN an exacerbation right now (well, I may be coming OUT of a "mild" exacerbation from a cold I caught in December). But, I went to Wal-mart yesterday and walked around (holding on to a cart) for a couple of hours.
I've also checked my respiratory rate a lot -- it is about 7 or 8 breaths per minute.
I took my shirt off and looked in the mirror to see HOW I breathed -- my shoulder blades seem to come UP and I get a hole under my adam's apple when I inhale --my stomach doesn't seem to move much.
I can ONLY take ONE deep breath for a doctor to listen to my lungs -- TWO deep breaths and I am ready to PASS OUT.
I can ONLY take ONE deep breath for a mammogram -- TWO or MORE..........
Don't even ask me to RUN..........but, I can walk at a "somewhat" regular pace (when I am NOT in exacerbation). I have to build up to walk distances, but that seems "normal" and reasonable.
My neuro (MG specialist) sent me to a Pulmo (very familiar with MG) after my first appointment. So, I've had the tests -- and everything has been documented.
So, my question is -- WHY have I not been in CRISIS? I seem to be on the verge of respiratory failure -- even my family thinks so -- I am NEVER left alone.
DON'T get me wrong, I am NOT complaining -- I have it GOOD!! I love my life. I am able to do so many things that I enjoy -- and I have so much peace about my situation. But, if I UNDERSTOOD this -- maybe, it would HELP somebody ELSE -- maybe some of YOU.
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jana,
you ask-why have I not been in crisis?
how do you define crisis?
the way you describe it, sounds like you have signficant respiratory muscle weakness and have learned to pace yourself accordingly.
no respiratory test is entirely accurate and right for everybody, and in order to do a proper respiratory evaluation you need multiple tests.
the counting test is a very rough estimate, and obviously a tall man, would be different then a small frail woman. just like other respiratory tests. it is meant for people that are not sure about what is going on, not as a substitue for proper respiratory evaluation.
I believe that if a newly diagnosed patient, who did not get used to the "MG pace" yet, would have the degree of respiratory muscle weakness that you have he/ she would not feel fine.
it sounds like you have very limited respiratory reserves, that you have learned to use wisely. which I think is great.
alice