Help with IVIG!
Hello,
I have a very rare illness of which my team of doctors has only limited understanding. The loose diagnosis is secondary MCAS with underlying immunodeficiency. My worst symptoms are generalized cognitive dysfunction that is temporarily triggered by even trace, airborne sugar. My doctors believe this temporary brain inflammation is caused by a highly stressed--and in some ways deficient--immune system, as my diagnosis indicates. Anyway, a couple of them have joined a VERY expensive group--essentially a concierge program. My neurologist and immunologist--both focused on complex illness--want me to try IVIG. So far, the concierge program paid for the "ramp-up" --2 weeks of 5g; 2 weeks of 10g--but we have not yet moved to therapeutic amounts, nor is it clear how I'm going to get it funded.
The first attempt to put it through insurance failed. I'm soon to meet with my neurologist (she's been out after serious surgery), and I'm sure we'll strategize. My question to you is if you have any thoughts about how I can get IVIG covered, one way or another.
Thanks so much, in advance!
Catherine