A little background. The first diagnosis was GB, and I started on plasmapheresis. Based on some of the results, the docs changed direction and went with IVIG. At the time, they weren't calling my condition CIDP, although that name started to seep into our discussions more and more. The IVIG produced very good results, and I was sent on my way to a different hospital for physical therapy. After a few days, relapse, then back to the first hospital and continued IVIG. I got better, went to physical therapy, but had another relapse. Back again to the first hospital, and they were worried. Back to the IVIG. The docs referred me to the Mayo Clinic. There, they officially called it CIDP and recommended IVIG and prednisone. The IVIG doses were nearly doubled in size and frequency. I made very fast progress.
When I got home, I could walk with a walker, but was shaky. After a week, I didn't need the walker. I was still getting the IVIGs, which were done with a visiting nurse. These were tapered over 6 weeks. The Prednisone was being tapered for 6 months, I believe. While I regained strength, my pain worsened.
After a few years, I went back to Mayo, asking if IVIG would help. After tests, the doc said IVIG was not indicated, and that the risks outweighed the benefits.
Now, one would think that I would respond by saying, "what are the risks?" But he was a fast talker and acted like our time was done, and we're walking to the door. I'm a professor and am used to asking questions and thinking on my feet when I teach and give conference talks. Not to brag, but before this damned problem, I could be a dazzling speaker and wow the audience, even while ad-libbing. And the laughs. Boy, I get misty recalling the glory days at the peak of my powers. But I am diminishing. Leaving the house is a challenge, as I am exposed to all kinds of pain-increasing stimuli. Pain is front page news in my daily life. It's mainly what I think about and work around. I used to be funny, but my wife says not so much anymore. I am speaking less and I walk from point A to point B so many feet later. There, I stand at the table, kitchen counter, bathroom sink, or sit on the bed until I build up the courage to walk to point C, then D, etc.
With the difficulty I have communicating, it takes me hours or days to process what was discuss and how I should respond. So, I am ashamed to say that I don't know why the Mayo doc believed that there was a risk associated with IVIG. I haven't been able to figure it out online, either. That's because it hurts to do anything time-consuming and systematic. What happens is that I sit at the computer and do stuff, then pause from the pain. I feel that any stimulus at all, including looking things up in my files, books, or on the internet, hurts.
Boy, talk about over-sharing. Just a little bit of hell, here. I'm so sorry to unburden like this.