Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
My journey started with looking for a reason for joint pain - basically most the joints in my limbs. Then I started getting pneumonias that wouldn't resolve easily...and fatigue.
(I also have a history of GI problems, ear infections as a kid, bronchitis bouts as a teen, etc.).
Anyway...in the last 3 years I have seen two rheumies with no results - all my bloodwork is normal....except for my IgGs of course but we didn't know that at the time. So as I have been on SubQ my IgG levels have climbed up to where they want them, but the joint pain has most definitely not changed, it's still bad. My question - are we zebras always going to confound these tests (ANA & others) or does getting our levels up affect these tests so they read 'true' ?
Lately with my increasing joint pain (snowy cold weather here) I am losing a lot of hair - this is new - when I work conditioner in my (long) hair in the shower I have many strands around my fingers daily.
(I also have a history of GI problems, ear infections as a kid, bronchitis bouts as a teen, etc.).
Anyway...in the last 3 years I have seen two rheumies with no results - all my bloodwork is normal....except for my IgGs of course but we didn't know that at the time. So as I have been on SubQ my IgG levels have climbed up to where they want them, but the joint pain has most definitely not changed, it's still bad. My question - are we zebras always going to confound these tests (ANA & others) or does getting our levels up affect these tests so they read 'true' ?
Lately with my increasing joint pain (snowy cold weather here) I am losing a lot of hair - this is new - when I work conditioner in my (long) hair in the shower I have many strands around my fingers daily.
the rheumy doc is the one who found the low blood levels and sent me to the immunologist.
I was also losing hair and I'm only 2 infusions in. I had my waiste long hair cut to shoulder length and it has helped.
I hope you find a doc who can help you sort out everything
hugs
deb