Quote:
Originally Posted by AnnieB3
This is what I was talking about. Here is a quote from the book Neuromuscular Junction Disorders: Diagnosis and Treatment, by Dr. Meriggioli, Dr. Howard and Dr. Harper:
“Arterial blood gas measurements are a relatively
insensitive measure of impending respiratory
decompensation in MG since the initial changes are
consistent with hyperventilation and are usually
attributed to anxiety. By the time CO2 retention
occurs, the respiratory muscles have already
begun to decompensate.”
And when they do the arterial blood gas, like they did with me during my crisis, while you have oxygen on, the readings are completely inaccurate! 
I was decompensating big time. 2/5 muscle strength and O2 sats dipping into the 70's. MIP average of -24. I was "fine" though, right? They didn't really need to put me in the ICU where my breathing could be monitored. They didn't really need to give me more than oxygen. And so what if I waited four days for any other treatment?  I must've just been anxious.
Ally/Alice and Alice/?, this is a good discussion. I know that it's complicated for a lot of people. Metabolic acidosis and respiratory alkalosis? It makes even doctors' heads spin. And the fluid issues I went through with diabetes insipidus going undiagnosed . . . I swear they couldn't figure it out if it was pointed out.
My real nickname is Annie.
Annie |
Annie,
you are right that in order to start having gas-exchange problems, you need to have very significant respiratory muscle weakness.
there is also a difference between having acute respiratory muscle weakness and chronic respiratory muscle weakness, in which you body gradually adjusts. its just like the difference between having a Hgb of 6.0 due to nutritional iron def., which gradually develops over time or having a Hgb. of 6.0 due to acute blood loss, or even acute hemolysis (where there are no hemodynamic changes).
when I was in crisis, 4 years ago, my MIP was -20, but my "baseline" MIP at that time was -70. so this was an abrupt change.
now my baseline MIP is around -35, and can go up to -40 on very good days or down to -20 on less good times, and I feel really ill, only when I am nearly paralyzed.
if I have a few really good days (which can occassionaly happen), I feel horrible when I go back to my "normal" baseline. and get a terrible headache with a PCO2 of a bit over 40. but, then within a few days, I feel reasonably well, and may have a PCO2 of 50+, without experiencing significant shortness of breath, and just feeling a bit less focused.
your story about your crisis sounds horrific.
I have had some similar experiences, and just couldn't believe that this could happen in the 21st century, and it is very hard for me to convince my colleagues that it does. (and I can understand why, because I am not sure I would have believed it).
I have promised myself that I will do everything that I possibly can to change this.
are you ready to help me in that?
alice