Missed that before.
IIRC, there's Harry, George, and Frank, but I don't remember the others.
Generally, I just ask how Harry, George, and Frank are doing and figure the rest of the guys are similar.
It has been a huge emotional benefit to have another patient in the house to make jokes about the insane world PWME live in. We were even able to laugh one night when we were both lying on the bathroom floor, too sick to crawl to bed -- her from vomiting from a migraine and low BP, and me from passing out from leaping out of bed too fast to go help her. A real mother-daughter bonding experience.
It's often a matter of laugh or cry and it's easier to laugh when there's someone else to help you see the (dark) humor in the situation. I'm going to miss that now that she's married and moved far away.
Does your daughter have the same immunoglobulin problems you have or no?
No, she doesn't, thank goodness. We're keeping our fingers crossed that she doesn't develop them. Interestingly, although our infections are the same, our immune pictures are different. She has had both low NK cell function and number, while mine tend to be normal or slightly high. I have very low CD8+ cell numbers, while hers are normal. We both have significant cytokine abnormalities, but they are not much alike. At some point I'm going to go through all our cytokine tests over several years and see if I can find any commonalities, but superficially they're not the same.
I find this interesting because we came down with the same extremely sudden onset illness at the same time (well, about a week apart IIRC), and have a similar pattern of symptoms. She went mostly into remission except for several PEM episodes a year until she got a live virus chicken pox vaccine, which knocked her into continuous illness. I never got better from the initial illness and went into a slow decline over 5-6 years. So for us, at least, even with many similarities in our illness, there are also significant differences.