Hey everyone,

I need some of your infinite wisdom. After my disappointing last hospitalization I was thinking of ways to show that I have respiratory problems. My thought was that since I have very bad difficulty breathing when I'm lying flat that it might be a good idea to lie down flat for about 45 minutes, get good and out of breath and feeling awful and then, while still lying down, have somebody draw an arterial blood gas.

I asked my primary doc if she could arrange this and I was happily surprised that she agreed. But, while walking out of her office I thought - do I even know that it really works this way? Would that work? Would that reflect a high co2 if my lungs are weak? Or do you actually have to be in crisis?

I had to spend 15 minutes going over every single step of the last year to show my doctor (again) that I had researched and quadruple verified every step of the way, and because of that had been right every step of the way, and that I was rational and wasn't flinging these questions and opinions around. And frankly, I needed to be given some credit because I HAD been right that I was having trouble breathing, that my oxysats were falling, that I had severe sleep apnea, that I would test positive for the mg antibodies (hello! a 1 in 10,000 chance), that the antibodies were proof that I had the disease, that the titre was not reflective of anything. Anyway, this was all precipated by my casually starting the office visit with "you may think I'm crazy but " and she surprised me by replying "well, not totally." Grrrrrrrrrrrrrrrrrrrrrr. Ya, that p***ed me off. Because I'm still asking questions and, dang it, I feel like I've earned the respect to be listened to. They're good and reasonable questions: why is my facial weakness blown off as bell's palsy when a quick search on google and medline make it clear that if it's recurring it's probably not bell's palsy it's mg (and my emg ruled out bell's palsy)? Why does the weakness and the breathing respond to mestinon if it's not caused by mg? Why do I have trouble breathing while lying down if I don't have lung weakness?

So anyway, I'm in a position that I don't want to go through with this test unless I know that it's a reasonable test for lung weakness. I know that I should have the attitude that whatever it comes back as is just one more piece of information, but I feel like I don't have the luxury of that because I have to constantly fight to be believed and respected and listened to and if this test comes back normal it's just one more thing I'm going to have to overcome.

Okay, as usual that was much longer than I had wanted. But I would appreciate any advice you guys can give me!!!!



Ally

Hi Bluesky,

Are you able to open this link from your comp.?

http://www.chestjournal.org/content/109/2/400.full.pdf

I found this many months ago when I was in the hopsital and it talks all about the tests used for people with MG who have breathing difficulties...At the time, I was able to access the full article, but I'm having some comp. issues right now and it wont let me open it...

It mainly talks about people who have upper airway obstruction that might not be easilly detected through the standard testing, and offers better tests to gather info. on true weakness when it comes to respiration...It was very helpful, but I can't open it now! lol...I hope that you're able to open it, and it's helpful!

Nicky

Thank you very much, Nicky! I had no problem accessing it. I just printed it out and I'm going to read it right now.

Ally

Yaye!

Nicky

Ally, What should be done is BOTH full PFT's and an ABG.

They should do the basic spirometry plus diffusing capacity and MIP/MEP. That very same day they should do the ABG. These results combined with how you are doing clinically give the best picture of what is going on and to what degree.

There's a large spectrum from "okay to dead" with MG and these test results! A doctor, who isn't such a sarcastic wench, would know this and take it all into consideration.

Don't drive yourself crazy, the doctors are doing that well enough for you. Just ask for those tests when you are not doing well and see what happens.

Maybe it's time to redo the antibody tests too so that you have more than one "false positive" test result (just kidding).

Annie

bluesky,

I don't want to dissapoint you, but I am not sure that your ABG will help.

one of the "problems" is that we do everything we possibly can to maintain our CO2 level and oxygenation. this is an instict we can't control.

further more, although there is a normal range for the level of CO2, based on the average population, you may, (like me) be an outlier.

it took a while to understand that my normal CO2 is around 35. and therefore a CO2 of 40 is not normal for me, let alone 50.

when I had clear evidence of significant respiratory muscle weakness, and nocturnal CO2 retention, my resting ABG showed a CO2 of 40.

that being said, it is a bit unpleasant, but not a complicated test, and if it does show significant abnormalities, they would not be able to ignore it anymore. I just don't want the opposite to happen, that they will say that since you have a normal ABG, your respiratory symptoms can't be due to a "real" problem.

so, I think you should go ahead with it, but make sure that your GP is aware of the fact that although an abnormal ABG clearly shows of a respiratory problem, a normal one does not exclude one.

let me know if there is anything I can do to help.

alice

Hi,

My dad is on a ventilator and has MG (had a crises a few months ago), and when he was having severe trouble weaning, they did an ABG while he was off the vent and found that he had extremely elevated CO2 levels. He was pretty much taken for plasmapheresis the next day. After the pheresis he didn't have any elevated CO2 problems.