unfortunately for all of us Shoshanna: you are not alone, I just feel like if I get through one day at a time I'm victorious. When I do have energy I take FULL ADVANTAGE of it. Because with this disorder, unless you get your infusions at regular times, and your levels are at a constant top off, you are going to be tired no matter what, no amount of vitamins or whatever is really going to make a difference. I think the best we can hope for is getting the therapeutic dose of immunoglobulins on a consistent basis, and then treating the discomfort of all the rest of the symptoms that comes with CVIDS. It sounds like muscle aches and joint pains is quite common as well as stomach and gastrointestinal issues. I can't imagine having all that combination of things going on. So sorry that you have to deal with that, hang in there though and stay plugged into our forum.

Shoshi, my hands and feet are always ice cold too! I asked my immunologist whether it was a CVID thing and he said "I think that's just a woman thing". Which was funny, but I felt a bit flippant. My hands and feet are painfully cold unless there's heat on them. When I was in my 20s I noticed that cold drinks would make my knuckles lock and I'd have to warm my hands before I could straighten my fingers. I wonder if we should add cold hands & feet to Kelli's spreadsheet? Anyone else have this problem?

Princess B ~ That's exactly what I mean! Sometimes they are just weak and don't want to move properly, so my fingers essentially stay in one pose. Then like today, it progressed from that to being iced up and I could barely bend the fingers or grip things. When I saw my immunologist last week and mentioned that it's worsening, he seemed concerned {like I had never mentioned it before}, and said we should follow up with a neurologist soon for a work-up. Arthritis? Or MS? God forbid both.

Something to add about the IVIG ~ I am not sure, but I think this is related...Every since I began the infusions in September, my blood sugar often registers really low for me, esp. since I have been monitoring the levels because I am developing diabetes. I would rarely be below 135, which was my low end for months. Now, while subbing in the classroom, I have to be hyper-vigilant. I will test at 80 or 78, which by then, I am already getting mentally foggy, etc. I am convinced the change is related to the infusions somehow...
Shoshi

I get cold hands and feet too ... and my lips often turn very blue when I'm cold. Sometimes I don't notice it right away, and someone will say, "why are your lips blue?" ... kind of embarrassing. Anyways, there was a time several years ago that the doc (who I was seeing then) thought I had Raynaud's Syndrome. I took some medication for it for awhile ... but then I just sort of blew it off. Maybe it was Raynauds or maybe it was an early precursor of my CVID ... who knows?!?