Re: respiratory distress in myasthenia gravis

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Posted by CCF Neuro MD *!* on December 26, 1997 at 09:34:52:

In Reply to: respiratory distress in myasthenia gravis posted by Jennie on December 23, 1997 at 20:34:35:

: I have been in respiratory distress many times, and many times my oxygen saturation stays up around 96, 97,98,99 and 100. Why does this happen? How do I educate doctors about resperiatory distress in MG, and even though my sats stay fine, that my muscle is tired and needs a rest? Also should thought be given to getting a trach? I have been intubated 17 times.
Jennie MG for a long time.

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The reason your oxygen saturation stays high is that oxygen saturation
is a very poor indicator of distress in MG.
It stays high because you are working so hard in terms of respiratory rate
and effort, however exhaustion soon develops in this state.
Oxygen saturation declines very late in the course of an exacerbation,too
late in fact as it is usually time for an urgent intubation at this stage.
The best indicators of muscle fatigue are parameters called
1 Forced vital capacity
2 Negative inspiratory force
You should advise your carers that declines in these parameters are
better indications of respiratory distress, and ideally have your care
supervised by a specialist, a neurologist who specialises in
neuromuscular disorders would be best.
The question of a trach is difficult and I feel would require a
more detailed knowlege of your case, than would be possible via
the internet.
The Dept of Neurology in The Cleveland Clinic has a large
neuromuscular section , if you require a detailed second opinion on your
current management the number for appointments is (216 ) 444 5559

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