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Old 10-23-2009, 07:17 PM #6
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Angry

Ally, Yes, your basic spirometry is normal. So what. That is not the best test for MG. Important yes but not best.

Like you said, MIP and MEP are the ones that should be done. I have an excellent pulmonologist who has standing orders for those if I get worse. They also check Total Lung Capacity.

The way they do the tests, like Alice said, is almost silly. If you have MG, your numbers may start out okay doing basic spirometry but get progressively worse. They should actually redo the spirometry again after everything else is done - just my opinion.

The other thing they do "wrong" in my opinion is to take the best #'s for MIP and MEP. Why is this wrong? Because you can keep getting worse with MG. That is an important FACT that a neuro would want to know about. If you are able to maintain a consistent set of numbers, they'd want to know that too. Right before my crisis, my numbers went from about -63 MIP down to -31 MIP. Pretty big drop when they are usually about the same each time. I always ask for a printout of ALL the numbers, not only the best ones.

If this guy doesn't "get" that you need MIP and MEP to see how your MG is doing and then, maybe, an arterial blood gas to make absolutely sure you are okay, then you need a new pulmonologist. You can't mess with this stuff. They have not fully evaluated your breathing and cannot say from the tests they did that you are okay. In fact, the numbers indicate that MIP and MEP should have been done. I only know all this because I have a great pulmy; and read a lot.

I disagree about the obesity issue. Why? Because with obesity, numbers of MIP and MEP do not go lower each time you do them. Obesity does not fatigue muscles, MG does. A good pulmonologist would know the difference.

Yes, breathing tests in general can be complicated. Looking at only MG is really not - at least not with a very good doctor.

Have you ever had an arterial blood gas done? It's not fun, that's for sure, but it can give the doctor a lot more info. And NO sleep apnea at night would not cause a drop in O2 sats during the day.

And if your lungs are not fully expanding, then your MIP is probably low. Geez, where is the thought process here?

You need a good pulmy because they are the ones who handle breathing issues if you are in a crisis. I hope you will not hesitate to call for a sooner appt. if you need one. This is all very silly . . . and dangerous.

Annie

Last edited by AnnieB3; 10-23-2009 at 08:42 PM.
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