I think I got hit by a truck while I slept. A truck that made my body completely numb, my head pound, and my vision suck.
This was posted in one of my groups… So accurate.
Little update from my angry post (“but which one?”)… The most recent. I hate being the obnoxious patient. My neurologist from UW called the other day to try to figure out what’s going on. She explained I DO have Dysautonomia and that there was a miscommunication. They generally keep the POTS diagnosis separate from other autonomic issues and that’s what she was trying to communicate via her nurse but it got all mixed up. She’s willing to add Dysautonomia to my chart and write me a letter for other doctors explaining this is a dysfunction of my autonomic nervous system and not necessarily a cardiac issue – adding that I need to see someone who understands the ANS.
My local neuro added Dysautonomia with orthostatic hypotension to my chart but the code she put in is showing as the fatal form of Dysautonomia – Multiple System Atrophy / Shy-Drager Syndrome. Her nurse says it shows something different on their problems list. At this point I think I am causing more harm and confusion and I’m going to step back and let them figure this labeling/coding issue out. I am very happy my UW neuro is writing a letter at least.
It’s almost 11 and all I’ve managed to feed my poor kids this morning is a few bowls of dry cereal, some water, and goldfish. I felt pretty good yesterday so I vacuumed, mopped, dusted, did laundry, moved kid’s beds around, and even showered! I was Hulk. I am paying for it today.