I am using a specialty pharmacy to give me my infusions at home. I have a wonderful relax-the-back chair where I spend most of my awake time and they just give me the infusions there. BCBS denied IVIG because I didn't have one of the named diseases even though I had gotten support letters from neurologists at MGH, Brigham, Tufts and the Mayo clinic. As a result I took money out of my retirement for a three month trial. MGH was going to charge $45,000 per month which I could not afford. A friend whose daughter has a neurologic condition told me about specialty pharmacies that do at home infusions. They charged $12-14,000 as I had to change the brand of IVIG due to an eczema reaction to the fake plasma in the cheapest one.

After the first infusion my ability to walk improved immensely. I kept a spread sheet of symptoms (on excel there are probably better programs for the computer savy) I have four pages describing: hands and arms, feet and legs, back and neck, and blood pressure, autonomic symptoms and anything else that was weird (e.g., when I got nauseous from IVIG or other symptoms which suggested that other systems might be being affected.). Doc tors will say that you shouldn't feel much relief from the first few infusions which might be true for some conditions but I have spoken to several people who have also had a positive response very quickly.

The spread sheet showed me that some symptoms like burning in my hands and feet had completely disappeared which was a god- send in itself. Other symptoms go up and down with my infusions which let to me getting IVIG every 3 weeks instead of every four because my symptoms would start returning after three weeks so I was spending most of my IVIG battling the same symptoms. So keep a detailed record of your own symptoms. I kept it daily for awhile but now do it every week or two.

Overtime from my spreadsheet also showed that while IVIG has really helped with my symptoms and I think slowed down my disease, my overall neuropathy keeps progressing and fairly rapidly. Although I had some symptoms, I was biking and hiking in China in November 2017, I was disabled by 2018 and in 2019 I started using an electric wheelchair. That's why I say 20-40% of my symptoms are gone, some go up and down with IVIG and I often have new symptoms appear and then retreat for a while after IVIG. I would be happy to private message with you on Connect if you have more questions that would be better handled with either of them.