Quote:
Originally Posted by Anacrusis
Jana 
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 couldnīt 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 Iīm talking about initial appointment and not ongoing care)
Anacrusis
PS....  |
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?