How I See It: Reflections on spirituality, technology, and the art of everyday life

My Intravenous immunoglobulin (IVIG) experience days 1, 2, 3 Day 1 1 st , I should say that each person will have a different experience, but this is what happened to me. I am getting Intravenous immunoglobulin (IVIG) because I have an autoimmune encephalopathy — in my case we think it is Hashimoto’s Encephalopathy (HE) or steroid-responsive encephalopathy. I have been on intravenous methylprednisolone for nearly two years, but as time has gone by my symptoms have been getting worse, and it was finally decided to move me from methylprednisolone to IVIG. I must say I was not prepared for what lay ahead when I walked into the infusion center. I had done a little reading on the treatment, but nowhere did I read that before they started the IVIG, first I had to have IV Benadryl. It was explained to me that they would start the IVIG at a very slow rate of speed, then after half an hour increase the rate, and increase it again every half...

Last night I was lying in bed reading when I felt a pop in my head (on the left side). Suddenly the foot of my bed sprang into the air while the head sank into the ground. It took all my considerable powers of concentration to convince myself that my bed was not spinning through the air and that this was some new symptom of my condition. When my bed landed, I found that it was still slowly spinning and my limbs were all numb and very weak. I just lay there for half an hour while my book continued to play, and I thought about calling an ambulance. But I knew there was nothing they would do except charge me a large amount of money. So I lay there until I felt strong enough to get up and update my contact list’s ICE (In Case of Emergency) entry. It is now a little over a week since I returned from the Mayo Clinic and nine weeks since my last steroid treatment. My condition is getting worse by the day. I met with my Primary ...

To begin at the bottom line: it has been decided to stop giving me Methylprednisolone (steroids) and instead try treating me with Intravenous Immunoglobulin (IVIG). IVIG is a human blood product. Basically, the two treatments are similar— both try to override my immune system and stop it from attacking my brain. Prednisolone is (sort of) an artificial form of immunoglobulin. The difference is that Prednisolone is man-made (in a lab) while Immunoglobulin is man-made (in someone’s body). IVIG does not have the side effects of Prednisolone, but costs a lot more and takes more time to infuse. The plan is, as soon as my insurance company approves the treatment, to give me the treatment for three days in a row, then once a week for twelve weeks, and see how I am doing at that time. How was the trip? It was a trip. I feel like I have been to the Vatican—there in the middle of the cornfields is the high temple of the Churc...