Hi everyone,

I went in for some pulmonary tests yesterday and was hoping someone could help me with the results. I just have preliminary results that the tech printed out for me. The spirometry tests were normal, but the lung volume tests were not. The tech said that the results were what she would expect for someone with mg, something to do with the lungs not fully emptying I think.

If anyone has any insight into the results I would love to hear it. Here they are:

Lung Volumes

TLC (Total Lung Capacity) best- 4.29 % of predicted - 84%
VC (Volume capacity?) best - 3.33 no % pred
RV (Residual volume) .96 57%
RV/TLC 22 68%
FRC/PL (Functional Residual Capacity/?) 1.52 54%
ERV (Expiratory Reserve Volume) .43 38%
IC (Inspiratory Capacity) 2.77 122%

I think the tech said something about the IC being high to compensate for the fact that my lungs weren't fully expanding. I'm not sure though, she was a fountain of knowledge and I couldn't keep up.

I tried googling this but didn't have much luck getting any straight answers. Any help is greatly appreciated!

Ally

You know I wish I could help but when it comes to breathing tests, I just don't understand them. When I had mine they would push me and push me until I just couldn't do it anymore and they would say, "Well we can't use this test result" What the heck does that mean?

My pulmonologist then said, well I think your MG is your main problem with breathing. Go figure, so well and I know this is wrong, I just stopped going to my Pulmonologist.

I so wish I could help you. Maybe Annie can

Hi,

first, I am glad that you were sent to have some respiratory tests done.

performance of respiratory tests in neuromuscular disorders is not trivial. it is quite easy to see that something is wrong, but assesing the true severity of the respiratory involvement, requires expertise.

I do not have this expertise, and my knowledge regarding this, is purely from my own experience and some reading that I have done, but very far from being able to asess the results of someone else's tests.

MG is very tricky, and you can easily have near normal tests now, and significantly abnormal ones a few hours later. my VC (which is vital capacity), could go from 4.5 to 1.5 and lower, within hours. I probably have more extreme fluctuations then most, but still, I believe that other patients have some changes as well.

also, I have noticed that my pulmonary pressures (which were not measured in your tests) were always much lower then what I expected them to be, sometimes on the verge of intubation, at the same time my volumes were near normal, which made no sense unless I was able to defy the laws of physics.

I eventually found the explanation for this-first, they always measured my volumes and then my pressures, and when we reversed the order the results were quite different. second-they over estimated the weakness of my diaphragm and underestimated the weakness of my other respiratory muscles, and therefore the resistance of my rib cage, was quite low and I was able to produce pretty good volumes with very low pressures, or as my pulmonologist said-your resistance is so low, that I can just go one Poof and easily fill your lungs with air.

he was the first one that actually measured the true pressures that I require, and adjusted my respiratory accordingly, after a year! in which I constantly told everyone that I am not anxious or depressed, but have a real problem with my respirator. and I eventually reached him only because I was not ready to accept any answers that did not make sense to me.

I think that is why I can also function reasonably well with respiratory pressures that are 30% of normal, but can rapidly collapse and require emergent respiratory support, when they go even slightly lower.

another patient with the same degree of respiratory muscle involvment who is obese or has some stiffness of his chest wall, could have very different results and require different management.

I am telling you this just so that you understand how complex it is, and why it is so easy to go wrong and reach wrong conclussions, if one does not have a good understanding of the mechanics of breathing, or "cuts corners" when performing the tests.

it is also very different from an illness like ALS, where there is a constant and fixed weakness of the respiratory muscles, which is not as much effort dependent.

is there a pulmonologist that is supposed to review your test results?

is your neurologist going to see them as well?

at least you seem to be going in the right direction, even if with quite a lot of detours along the way.

alice

Alice,

Thank you for replying to this post, I have to admit I was curious about the lung function tests, I always deemed them useless because after the testing I would have trouble breathing and say.. test me now, but they wouldn't. Go figure.

You are great to explain it all

Okay, I'm sorry - I just have to vent. I am so irritated.

The nurse from my PCP called this morning to tell me that the pulmonary test came back saying that I was normal, that my doctor was very relieved and that probably the low oxysats were from the sleep apnea.

Okay, first of all: low oxysats in the afternoon from sleep apnea? That just doesn't make any sense.

But here is what kills me. My doctor is relieved?!? Why? What are these magical powers that the doctors I see believe in that when a test comes back negative the symptoms disappear? AAAAaaaaaaaaghhh!

Guess what? I still can't breathe, I still have positive antibodies for a disease which could kill me and which remains untreated. I'm not relieved! If the test didn't show anything than it's the wrong test (why didn't they do MEP and MIP?) or the wrong way. I just don't understand this backward logic that the test cures the disease.

I was so mad I went over to her office to get the report. I was standing there completely out of breath from walking to the office from the parking lot, using all my willpower to make myself stand when my body was screaming, "sit down you idiot!" as I was reading this report that said I don't have any breathing problems. The report also said that because the spirometry was normal there was no indication of mg. No mention whatsoever of the abnormal lung volume results except to say that the total lung volume was normal

Okay, well I guess I'll have to wait to talk to the pulmonologist when I see him - in December. Aaarrrgggh.

Btw, Alice, don't worry - between google and you I'm totally convinced that this stuff is complicated. I just wish there was more recognition of the complexity of this disease in the docs I see. Okay, I know, I need to be patient. Deep breaths. Oh whoops, can't do that.

Ally

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

On second thought, maybe I'm just a female in the grips of delusional hysteria. And probably my bra's too tight.

Ally

Hysterical hypoxemia.
Holding your breath (thanks Rach).
Feeling sorry for yourself.
Sudden obesity.
Insufficient effort.
Medical error.
Paranoia.


There wasn't an icon for the cranium being in the southernmost orifice.

Thanks Ally,

I have just removed my bra and waiting for results..........................waiting waiting......on oops thats right it isn't all in my head...... I think maybe......or is it....

Kate
ps sorry for the sarcasm am having a waaaaayyyy baddd day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!and annoyed that there seem to be so many medical persons out there that put our "problems" down to "emotion" and you can just see them thinking "and cos your a woman" grrrr
but thanks for the laugh.

Oh my gosh, you guys are making me laugh . . .