Oops. I had written avery long post while lying in bed the other night, something weird happened and I thought it had been completely lost. I guess the title survived. Perhaps I'll just sum it up as briefly as possible.
I've been through the ER more times than I can count in the past year. My record for staying healthy was just shy of 5 eeks last year, but most months I was in more than once.Doctors have a bad habit of encouraging me to leave after a couple of days, but I always have a bounce back 3-5 days after receiving IVIG. I should know better than to take the bait when my life is on the line. Had a few close calls, but in those cases I was still admitted.
My treatment has morphed a little bit over the past few years. we discontinued the monthly IVIG treatments as they were actually causing more episodes than they prevented. My emergency protocol now involves a bolus of hypertonic saline to get my sodium levels up (they tend to drop) and create a gradient between the blood in my general circulation and that in my brain. Cerebral edema is something that's been happening and getting IVIG tends to make it worse for me. My dosage of IVIG has been halved on ER admissions, but I'm usually getting another dose when everything starts shifting after a few days. After the second, or third, dose, I usually recover fairly quickly.
As to the specifics of my case and research that's being done on my (our) behalf locally. My genetics have been checked out and nothing really stands out. I have an elevated but stable MGUS protein, as many of you do. We've done cytokine panels and have noticed one that's slightly elevated when I'm ill, but treating it would involved shutting down my immune system with some nasty drugs. My doc has been running a study involving capillary leak syndrome during pregnancy and has been making comparisons between my case (as a non-pregnant guy!) and his research pool. The testing involves a laser beam being reflected off the back of my eyes and into an incredibly sensitive scanning device. I think it's called OCT. We've learned that when fluid shifts in my circulation, my retinas either swell or thin by a few microns, or some other tiny measurement.
So, that's the not so brief briefing on what's up with me. If anyone has any questions, hit me up. I've learned a lot in the past 7 years.