Chronic Inflammatory Demyelinating Polyneuropathy

In the summer of 2024 I had some tingling and numbness in my fingers and in my feet. I tried to ignore the symptoms, but in the summer of 2025 they got considerably worse. At that time I was scheduling total knee replacements, first for my left knee and then eventually for my right knee, and I wondered if my nerve issues in my feet were really due to bad knees. 

In October, I had a total knee replacement of my left knee. It became clear after surgery that this was not linked to my nerve issues. Eventually, I had a nerve conduction test (EMG) that came back with a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP.). I have an auto-immune disease, a disease which is causing inflammations that remove the myelin sheath from my nerves. As I understand it, the myelin sheaths are essentially insulation and as the sheaths disappear, my nerves began to short out. 

This is a chronic and progressive disease, but there are attacks on the disease intended to put the disease into remission and stop the deterioration — or even allow some healing to occur. The most common treatment for the disease is an IVIG infusion. IVIG (another four letter acronym!) is an IV infusion of donor blood plasma that is intended to reset some aspects of my immune system. Beginning this Monday (March 16, 2026) I will have five consecutive days of four hours each of IV infusion at a local hospital. (I will not need to stay overnight.) After that, it is common to have the IV infusion one day every three weeks or so, and so evaluate the success of the infusion. My doctor has put in a request to the Mayo Clinic in Rochester, Minnesota, and so I may eventually get to be a research subject there. (And so my research career continues? If they study me, can I be listed as an author? I wonder if there is some physician at Mayo that would like an Erdos number of 3?)

I alternate between occasionally finding this very interesting — Why do my fingers feel like they do and act like they do? — and also, of course, finding this very frightening. Jan and I have both been a bit depressed by this as we try to figure out the direction of the disease and my disability.

I now walk with a cane. I have small issues with my fingers and so I do not write well. I'm beginning to dictate instead of type. (A draft of this post has been dictated using the MacBook’s F5 function) The constant barrage of symptoms from my nerves, especially tingles and stings in my feet, make it difficult to sleep at night. I have found two solutions to that problem. A doctor prescribed gabapentin and that certainly helps. And a good friend suggested THC gummies. I’ve discovered that a 5 mg THC gummy, which can be purchased legally in Michigan, makes me feel relaxed and does seem to remove the nerve pain for some time. 

At this time, I'm trying to find a good rhythm to the gabapentin and looking forward to next week's IV infusion.