I'm 13 and I have voltage gated potassium channel auto-immunity, disautonomia, hashimotos (I'm spelling it wrong), and a HUGE mystery disease causing all of above diseases and lots of symptoms. the and mainly gastric issues. I am having my 3rd treatment near v-day.
Im 13 with vasculitis and parsplanitis i ive been on four different chemos, but none have taken away the disease into remission so im going for ivig soon, maybe ill make a video when im done!! I dont know you but im happy to see im not the only one :)
A dear friend of mine is going through the same thing and I know how expensive this treatment can get. Our biggest fear is if the insurance will cover the cost eachmonth. At any rate I felt compelled to wish you well. You're very brave and upbeat. Kudos to you and the nurses who care for U.
I was on IVIG for a little over six years (ages 14-21ish), and I trialed off at the end of last summer. So far I've been relatively healthy, but I've had a few more infections in the last couple of months, so I have to get more labs and whatnot to make sure my levels are still in a good range and my immune system is responding and making antibodies correctly.
I hope you're doing well and that you've successfully stayed off too!
You are soooo cute. I also get IVIG's sadly there has nerver been a last one yet. :( hopfuly someday. I get them to help my immune system which of course i know you all ready knew that i didnt have to tell ya that heehee. I'm a heart transplant so i know how it feels to get them and good luck with the best of health and that you never have to get another IVIG ever again! :)
I'm 13 and I have voltage gated potassium channel auto-immunity, disautonomia, hashimotos (I'm spelling it wrong), and a HUGE mystery disease causing all of above diseases and lots of symptoms. the and mainly gastric issues. I am having my 3rd treatment near v-day.
katprincess929 3 weeks ago
Im 13 with vasculitis and parsplanitis i ive been on four different chemos, but none have taken away the disease into remission so im going for ivig soon, maybe ill make a video when im done!! I dont know you but im happy to see im not the only one :)
tumbletime77 3 months ago
Im 13 and i have an immune s
tumbletime77 3 months ago
A dear friend of mine is going through the same thing and I know how expensive this treatment can get. Our biggest fear is if the insurance will cover the cost eachmonth. At any rate I felt compelled to wish you well. You're very brave and upbeat. Kudos to you and the nurses who care for U.
Keep On Keeping On !
:)
demopoulosnow 6 months ago
I was on IVIG for a little over six years (ages 14-21ish), and I trialed off at the end of last summer. So far I've been relatively healthy, but I've had a few more infections in the last couple of months, so I have to get more labs and whatnot to make sure my levels are still in a good range and my immune system is responding and making antibodies correctly.
I hope you're doing well and that you've successfully stayed off too!
HiccupDancer 9 months ago
You are soooo cute. I also get IVIG's sadly there has nerver been a last one yet. :( hopfuly someday. I get them to help my immune system which of course i know you all ready knew that i didnt have to tell ya that heehee. I'm a heart transplant so i know how it feels to get them and good luck with the best of health and that you never have to get another IVIG ever again! :)
reba233100 11 months ago
how about 9 years doing that and see what happens with my silly nuries that look care of my ivig
tinmanlover1994 1 year ago
@tinmanlover1994 well maybe 7 years with my silly nuries i miss them love u guys xoxoxoxo
tinmanlover1994 1 year ago
that was funny when the nurie gave you a lilpop and wow done at 9 at night i did my ivigs in the morring and got done at noon time or at 2pm
tinmanlover1994 1 year ago