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.
I'm leaving for Los Angeles in an hour or so, can anyone think of any questions I need to ask this doctor??? I have a list going but you all may think of something I haven't :)
Thank you!!!!
Kelli
Thank you!!!!
Kelli
Some of the questions I asked were:
Do you treat the patient or the levels
What is your "goal" level (mine said 1000)
How will you help me regain my quality of life
Can we make antibodies (always test but take negative's with a grain of salt because we make low to none)
Sorry all I can think of right now:(
I asked if we were more susceptible to skin infections or female issues or just like upper respiratory. IN his opinion, it is upper respiratory, sinus, ears, lungs.
I like that he started at the beginning of when I got sick. He also believes it is sometimes "acquired".
I asked him if my bad homozygous gene could be the one responsible for this? He had no idea lol Thats ok i didn't hold it against him.
I did ask him about that TACI gene or whatever I keep reading about, he said we would test for it someday. I don't know what I accidentally asked about lol I need to SHUT up sometimes, that was a time.
I asked if I should test my daughter and he said absolutely.
I asked if I should wear face masks and he said no.
I'm still not really understanding WHY this lung disease is so bad, he didn't explain it. He did say little is known about it, only about 10% of us get it and there is no "definitive" treatment for it.
In his career he has had 10-12 CVID patients. ONE with my lung disease and CVID.
Mmmm did that help anyone? hehe Thats what I remember so far. I 'll keep adding as I remember :)