Originally Posted by Anacrusis
Do you know what tests a pulmonologist would do with bulbar symptoms related to MG rather than those for pathological swallowing problems?
I know having a grain of rice lodged for 45 minutes is not normal and nor is choking on saliva/a surprise gush of juice from chewing a piece of fruit. But I couldn´t guarantee presenting with those symptoms at the exact time of an appointment for inspection since they come and they go. That could put me off going. (Here I´m talking about initial appointment and not ongoing care)
Ok, I hope I get this RIGHT.........if I don't, there are several people here who can add to/fix the info I'm gonna give!!
There are several tests to measure the muscle strength of an MGer:
VC -- Vital Capacity
NIF -- Negative Inspiratory Force
MIP -- Maximal Inspiratory Pressure
You need to get at least one of these tests done as a "baseline" on a "good" day. That way, IF/WHEN you have respiratory problems, you (and your medical team) will have something to compare it to.
WHEN you are having trouble breathing, O2 saturation is NOT a good measurement for MGers. You know that finger "thingy" they put on you? An MGer can appear to be FINE as far as their oxygen levels go -- and ACTUALLY be about to go into crisis. ABG (Arterial Blood Gas) is FAR more accurate for us -- it shows CO2 (Carbon Di-Oxide) levels which build up because our muscles are too weak to EXPEL air properly. For example, I can inhale "ok" -- exhaling is HARD.....as in blowing up a balloon!
I have all of this info in my purse so that I can REMEMBER to ask for a VC or NIF and an ABG if needed. I also have info about trying a CPAP or Bi-PAP first -- before intubation. Even if I can't talk, I'm gonna be pro-active!
A problem I have (and more often, recently).....I am sniffing at the same time as I swallow food (allergy season, here). YIKES!! Food is trying MIGHTILY to go into my lungs. I can FEEL it. SCARY!! Also, everytime I throw up (and I've thrown up SEVERAL times this year), food comes out through my NOSE! Painful AND disgusting!! And, when I take my pills at night with a little water, once I FINALLY am able to swallow the pills, water comes out my nose. YUK!!!!
My MG doc appointments are always in the afternoon. I suspect he wants to see the "real" me -- the weaker me. Perhaps you could make a pulmo appointment later in the day?