Hi. My case is very different from everyone I have seen here. Anti-MAG hit me like a freight train.

In early March 2023, at age 68, my fingers went numb. I asked Google about numb fingers and it came up with “carpel tunnel”. I thought, “what a pain”, but it didn’t sound like an emergency. The next week I noticed extreme exhaustion. I went to bed an hour early each night feeling like I’d just run a marathon, even though I’d only spent the day on my PC. And I had night sweats. I would wake up sopping wet. I thought, “maybe some kind of flu”, and I waited for it to pass. The third week was the shocker. I finally got up from my computer to prune the fruit trees (late as usual). It was bizarre. I felt like I was wearing a 100 lb. lead suit. Every movement was incredibly difficult. I could barely hold my little electric chainsaw. I panicked. My mind went immediately to MS which my sister has. She is now in a wheelchair.

I called my Dr. the first of April. He ran some tests. It took a month to get a Neurology referral from him. The first of May, I talked to the Neurology office. Their first available appointment was not till sometime in July. My heart sank. But a friend told me about GBS. That sounded a lot better than MS, so In the absence of any other information, that is what I focused on.

In May I could still walk, drive, go to the food store etc. But it was getting harder. I would park next to the cart bin, then hold on to the car or bin till I could grab a shopping cart to hold on to. Later in the month, I started having falls. If my foot would unexpectedly catch the edge of a carpet or an uneven sidewalk, I no longer had the reflexes to recover, and I would go down.

By mid-June I could not walk at all without a walker and I felt none to steady with that either. For anything over 100’ I had someone push me in a transport chair. I no longer felt safe coming down the stairs from the bedroom, so I did it on my butt. Later PT got braces for my shoes to steady my leg and they showed me how to do the stairs sideways, one step at a time, facing and holding the rail with both hands. But I only did that for Dr. appointments. So, I’m pretty much confined to my bedroom now. I slide from my bed into my computer chair in time to eat breakfast at my computer desk where I sit till after dinner, when I slide back to my bed. My fingers were so weak and uncoordinated that I could no longer operate a standard nail clipper or open a bag of potato chips. I lost hearing in my right ear. My bowels stopped working – I stopped pooping. I had to take stool softeners twice a day. I had terrible gas pains and felt bloated. My feet were swollen. I bought compression socks but was totally unable to put them on. At night my legs ached from my butt to my feet.

All this time I’d had a pretty good attitude, thinking that GBS/CIDP is treatable and completely reversible. I’d soon be back to hiking, backpacking, and cross-country skiing in the Colorado mountains. (I had some GREAT trips in 2022). This was just a bump in the road and just the chance I’d been looking for to step back and catch up on a mountain of reading and various computer projects.

My attitude abruptly changed in July. I finally met with my neurologist. After a nerve conduction study, a spinal tap, MRI scans, and endless blood tests (at least 24 tubes), by the end of July I finally had a diagnosis – anti-MAG. And the prognosis for that did not look nearly s rosey. My Dr said in 4 and a half years he’d only seen one other case. I asked how that patient did, but did not get a clear answer. I continued to deteriorate.

Mid August – I’m scheduled for my first round of rituximab next week, but after reading the studies I’m not particularly impressed with its effectiveness. My arms and fingers have reached a new level of numbness. I can no longer really type, only hunt and peck. The muscles in my arms and legs are now incredibly tight and hard to stretch. I am now closing out all my open projects as best as I can, looking for others to pass on my volunteer duties to, gathering up all my financial papers and notes for my wife, and I think it is time to register my DNR orders.

Given my rapid progression, I have to wonder what triggered it. I hope it wasn’t my UV exposure. A week before this started, I was setting up my fluorescent mineral display at our rock show. I was using our new 195-watt UV-C lamp. (UV-C is right next to X-ray on the electromagnetic spectrum). A couple of times my hands got so close to the lamp, it felt like they were being cooked from the inside. It was a strange sensation. Of course, my wife blames it all (blames everything) on the Covid vaccine (which she refused to get).