October Heat Triggers a Surprise MS Pseudoexacerbation

Heat has been my kryptonite ever since I was diagnosed with multiple sclerosis (MS) in 1986. In fact, heat intolerance was one of my first symptoms.

A few months before I was diagnosed, I was playing varsity soccer in Indonesia, where my parents were stationed for a few years. I had already experienced symptoms of optic neuritis, and on that hot soccer field, 7 degrees off the equator, my vision was getting really blurry, made worse by the heat. The optic neuritis was bad enough, but coupled with heat, it made me lose my sense of being.

My once pristine island life was now mucked up by neurological symptoms. Little did I know that all this would explode years later.

Before MS had even shown itself, with its plethora of symptoms, I knew something was off with the heat; it didn’t make me feel good. Then, oddly enough, the bad feeling with the heat lifted and disappeared for a few years.

I wish it had disappeared forever, but instead, it has often come back over the years as a pseudoexacerbation, which is a fancy way of saying that it’s not a full-blown MS relapse, or exacerbation, but a temporary worsening of symptoms that will go away when whatever is causing it goes away.

In Spite of My History, I Didn’t Recognize That Heat Was the Problem

Well, I experienced a heat-induced pseudoexacerbation recently that turned my world upside down and lasted quite a while!

It was a very oddly hot day in October. I had a very warm sweatshirt on. Things were extremely warm as sun poured through the room. I went to the toilet, thinking nothing of the heat, my sweatshirt, or the heat being generated by the heater in the room.

I was moving normally until I put the toilet lid down to sit and think about my next move. I was feeling weak and couldn’t even lift my left arm up. I had just enough energy to lift the toilet seat and sit in the toilet bowl, which would hold me. If I had sat on the seat, I would have just slid off, given the strange feeling of heaviness and weakness that I was having. I sat there, never realizing it was heat causing the brain fog and weakness.

It was 10:30 in the morning, and earlier in the day, I had told David, my care partner, that he could go and do his errands in town, thinking nothing was wrong.

As I sat there, I didn’t think to take off my sweatshirt, because I didn’t know that heat was the problem. At that point I entered a comatose state. I sat there, safely, for three hours until 1:30. Those three hours unable to move truly made me look completely incapacitated.

At 1:30, my friend Roxanne came to do physical therapy with me and was baffled by my condition. She called David, who, knowing about my sensitivity to heat, recognized the problem as soon as he saw me, and took off my sweatshirt.

The Importance of Informing Caregivers

I have learned over time that the more demyelination there is, the more temperature sensitivity there is. The example given to me in basic terms was the plastic covering (myelin) on a telephone cord, which can be stripped away (demyelination), exposing a bare wire (nerve). So in my case, a great deal of demyelination left the exposed nerve vulnerable.

When Roxanne found me there, she thought the worst. But what a caregiver — or in this case, my friend — needs to know is that what happened was a pseudoexacerbation because of heat, not because my MS was getting worse.

I know what it must have looked like. So I need to give everyone around me a break, including myself. Caregivers need to learn how heat affects us with MS and how we’re affected differently. The irony here is that even I didn’t know what was wrong. It was only hindsight that made it clear.

So Weak, I Couldn’t Lift My Head

There is one thing that I noticed a while ago. When I drop my head down to my chest with a feeling of complete weakness, I know something has completely weakened me. Very often, heat is the culprit.

As I sat in the toilet bowl, my neck was on my chest with no way to lift it; I was that weak. And heat was the culprit once again.

The other thing I noticed was the constant stream of “metacognition” as I was trying to solve the predicament I was in. My sense and inner voice told me to get as comfortable as possible, give up, and try nothing new. I was just so tired.

I obliged and safely sat there for three hours, knowing I would be rescued at 1:30.

Once I Cooled Down, I Recovered

Quite soon after I was allowed to stretch out on my wheelchair in a T-shirt in a neutral temperature, I started to recover. I just needed no fussing and some space. It was difficult to explain to Roxanne why she had found me as she did: unable to hold up my neck.

I think I can finally give caregivers and friends a synopsis of what to look for and what can happen and why in these situations. I have to let them know this before a catastrophe like this last one unfolds.