I was discharged without IVIG from the hospital this morning since the head neurologist
overruled the kindhearted 3rd year resident
who'd diagnosed me as having MG.
(I'll be writing the resident a nice thank you letter).
I went to a friend's house for caregiving. MG was piercingly bad, I couldn't move, lots of pain mostly around neck, jaw & tongue locked, tremor pains with inhalation & then more constantly in upper chest. We called 911 and had five good looking EMT and fire department guys
excavate me from the 2nd floor
& take me to another E.R. There, the doctor finally did tensilon. As suspected, I noticed the difference in my lungs more than anywhere (I believe I've had MG mildly since I was a kid with lungs being the main focal point of weakness). Before tensilon, rapidly repeated peak flow meter readings were 700 to 380 three times over. After tensilon, peak flow meter readings were 700 six times in rapid succession. As suggested by someone on this board (Annie?), I took a before & after photo of my face to show facial changes with the tensilon. Yes, I too had eyelid, eyebrow & nose ptosis. Very striking the difference.
Coming back to the friend's house with suggested dosage change in mestinon, I'm still so weak it took 10 minutes to climb 13 stairs. I am more debilitated than I'd known it was possible to feel.
Interesting mysterious note, my blood pressure readings once again varied tremendously in a short period of time, ranging from 142/99 to 103/31.
Of note, the more intense throat constriction hit while the latter bp reading was taking place, so I'm sure it was registering a physical change rather than a computer glitch.
The doctor felt there was not benefit to having oxygen since my airway wasn't obviously being obstructed (although he allowed me to use it the whole time I was in the E.R.) But I recalled on the way home that fatigued muscles suffer from oxygen debt which explains why I feel so much better with oxygen.
Tomorrow, I have my first consultation with the new primary physician whom I love, the one whose dad has MG & it's now his mission in life to be the quarterback/advocate for MG patients who need navigation assistance.
Monday, I have my first consultation with the MG-expert neuro who's already been forwarded the tensilon results & is friends with the E.R. doctor who administered today's test. I'm hoping he'll give me IVIG or plasmapheresis to see if I can be returned in some semblance to myself.
In the meantime, my body is in agony. But the sun is shining as I type this regardless of the time of night.