I thought I had a cold.
Then, for two nights running, I got sharp muscular pains in my upper back. So I thought I had a flu.
Then, I got very tired in my legs. I thought I had a bad flu. Which was odd, because I mostly felt fine.
Then I started having trouble walking. Walking was clumsy and tiring. I did not know it at the time, but the phrase for what was happening was "ascending paralysis." The clumsyness I experienced in walking was a paralysis, which was steadily ascending towards my arms.
On Saturday, I could hardly walk at all, but I needed fluids for my weird flu. So I made an expedition two blocks down to the gas station. I walked resting point to resting point, with a break between, the two blocks down. And then the harder expedition of the two blocks back.
When I got back from the expedition, entirely spent, I was still two flights of steps down.
I made strong mental effort to get my leg to rise for the first step. It took about five seconds. Then I made strong mental effort to get my leg to rise for the second step. This took longer. Then I attacked the third step.
For the final flight, I hoisted myself up the stairwell using my arms on the railings, plastic bag of groceries clamped by my teeth. I would have tied the bag to a belt loop, but my fingers didn't work well enough to make a knot.
The next day, Sunday, I went to the emergency room.
They gave me a CAT scan, looking for brain tumor, and found nothing.
They did a bunch of basic reflex tests.
A doctor came in and announced they had ruled out multiple sclerosis and Lou Gehrig's disease. Which was a bit of a surprise to me, because I hadn't known anything of the severity had been considered in.
They said they were sending me home for the night. Fifteen minutes later, another doctor came in, and announced it was time for my spinal tap.
Seeing my eyes widen a bit, he said don't worry, he has already done two. This would be his third.
They had me arch my spine to the sky. They stuck a very thin needle into my spine to collect fluid. It didn't hurt, beyond basic needle. When they were done, they stuck a small round bandaid on the spot.
They turned off the lights in the examination room, told me that vivid dreams were not uncommon, and left me for a bit.
I was floating in the warmest clearest green and most pleasant sea imaginable.
With me were one dozen boiled lobsters. Their spines were arched towards the sky. It was an oceanic dream. I got worried about my hand in boiling the lobsters, and they assured me that everything is OK.
Then I got worried that the cooked lobsters, who were my friends, and who were OK that I had boiled them, would start to stink. They assured me this would not happen.
Then, a doctor came back in the room. He said that my spinal tap showed a high cell count. He explained about Guillain Barré.
Guillain Barré Syndrome
Guillain Barré Syndrome is an autoimmune disorder of the peripheral nervous system. It is officially classified as a rare disease.
Think of your nerves as wires. Think of the myelin sheaths as the insulation on the wires.
Think of Guillain Barré as starting with a cold or flu
In Guillain Barré, it is thought, exposure to a bacteria or a virus causes an autoimmune attack on the myelin sheaths of the peripheral nerves, and therefore a nerve conduction block, leading to a muscle paralysis.
Six different subtypes exist. I had the most common form, called acute inflammatory demyelinating polyneuropathy (AIDP).
My myelin sheaths were demyelinizing. My brain was not in dependable contact with my legs. Messages did not get through. Messages were slow and sparky in getting through. Messages easily overloaded.
My foot, when I walked, would sometimes fold under, because I couldn't much tell.
The version I got was quite typical, to the extent there is a typical course of a rare disease. The association with the cold or flu. The roughly one week onset, with the ascending paralysis from legs to arms. The sharp pain I noticed in my back, early on, is a commonly noticed and distinctive sign.
First In, First Out Effect
My trouble walking was mostly disappearing in about a week. Trouble in my arms never got as bad, but was still kicking in. This seemed counter intuitive. I would have expected the worse problem to have lasted longer.
Essentially, I guess, my leg nerves were remyelinizing, as my arms were still demyelinizing.
Joseph Heller and Guillain Barré
Guillain Barré ranges in severity, up to a life threatening form from inability to breathe.
Catch-22 author Joseph Heller got a severe version. He recounts his experience in No Laughing Matter. The book is an excellent guide to the disease, and a good read at any rate.