Is there a yearly national forum? And a Denver group?
AnonymousMay 1, 2013 at 6:00 am
Blessings on you knowledgeable ones!
I’m a newbie here. I was doing maintenance Rituxan, to keep me in longer remission from a rare Bone marrow cancer called Waldenstroms Macroglobulinemia. I got an infection, caused from the low white blood count (Rituxan caused). This put me in the hospital for 10 days. Along with the infection, I had a sudden onset of balance problems and my left arm and hand quit working. It was pretty worrysome, and after a spinal tap, Dr’s diag me with GBS or CIDP. After a couple of IVIG treatments, my arm started coming to life. I have returned to almost normal, and am an avid bicycle rider. I have some walking/standing endurance problems, but NONE on the bicycle.
Now, 8 mo later, I’m wondering if I’ll ever be able kick my hugely expensive IV drug habit. I’m sure my insurance co hates me with this $7000 monthly IVIG habit.
One time I extended my IVIG treatment to 2 1/2 months, and in a way it was a good thing to experience. It made me realize that the IVIG WAS REALLY keeping this major problem at bay! IVIG was not just a psycho-semantic, crutch, but DID have a HUGE positive effect on my balance and overall ability to us my limbs. I realized if I went another 2 months without my fix I’d probably be in a wheelchair!
IVIG, what a powerful liquid! How dependant many of us are on it! Who are all those donors, that IVIG is derived from, and what is the cheapest worldwide price? As in is it 1/4 the price in any other country?
Do you guys have an annual get togther/conference? And is there a Denver local group?
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