If you have MS or know someone who has MS, you surely have witnessed feeling or seeing some rather bizarre symptoms. Due to the fact that Multiple Sclerosis is a disease of the central nervous system, virtually any part of your body connected to nerves can be affected. This includes the top of your scalp right down to your tippy toes. It also can include your cognitive and mood centers. This disease seems to have mood swings of its own. One day your right arm may be affected, the next day your vision may be distorted, on yet another day your gait may resemble a drunken sailor. MS is like a box of chocolates, you never know what you are gonna get. Okay a really awful box of chocolates.
Some of the weird bodily symptoms I have experienced in my first year of my disease have included numbness for specific patches of skin. I have felt a portion of my scalp go numb as well as the roof of my mouth and top lip. I have also experienced the feeling of ants or creepy crawly bugs running up my leg. I have also had the feeling of my leg being immersed in warm water when there is nothing there. These are but some of the seonsory illusions this disease can create.
What has been the most strange for me, however, are not the bodily symptoms but the cognitive and mood issues.
I am here to tell you that MS can sometimes make you feel pretty darn good. I know everyone talks about the depression and anxiety which seem to go hand in hand with Multiple Sclerosis but did you also know that MS can also cause feelings of euphoria?
It’s true. Check this out. On a web site called Wrong Diagnosis, they discuss the misdiagnosis of mental disorders for people who have Multiple Sclerosis. In an article entitled, Misdiagnosis of Euphoria, the authors state: "Multiple sclerosis is often misdiagnosed as mental disorder**: The early stages of multiple sclerosis may cause various general feelings of wellness, happiness, euphoria, or manic-type symptoms in some patients."**
And I have personally experienced these feelings of euphoria during this first year following my diagnosis. This is a very tricky issue because I have always felt like I may be on the mood disorder spectrum. I do experience hypomania or times of heightened energy. So what is caused by mood disorder and what is caused by MS? It is one of those questions like which came first, the chicken or the egg. Let’s face it, neurological disorders cause mood disorders. We are biological beings. And if things are misfiring up there in our mood centers, we can expect a wide array of symptoms.
I was most surprised when the euphoria would hit me out of the blue, usually preceded by a feeling of slight dizziness or bright flashes in my periphery. It was like grasping onto a most pleasant sensory memory of the perfect summer day as a child where you don’t have a care in the world. Sometimes these feelings last for hours and the whole world seems vibrant and alive. And just as soon as it comes, the feeling departs and I am left to wonder if it will ever come back. As much as the brain is capable of lowering us to our melancholic depths, it is also able to create emotional highs as well. Since my diagnosis of MS, I have been feeling this range in mood quite acutely.
In addition to great volatility of mood, I have also had my share of bizarre cognitive symptoms. What I am about to tell you sounds like it could be written straight from an Oliver Sachs book about odd people and their strange neurological symptoms. I have always been a bit of an outlier but my MS is ensuring my position in the outer realm of data points. I would welcome any researcher to study me and my MSy brain. I am sure there is enough there to fuel several studies at least.
Maybe you have heard of the TV show, “Numbers.” An FBI agent and his mathematical genius brother combine mathematics and police work to help solve crimes. This show highlights a fascination or one could say an obsession with numbers. I have never understood such an obsession and I have never been fond of either mathematics or numbers. Until several months ago, that is.
My MS episodes of symptoms usually are preceded by a feeling of dizziness, or a sick feeling in my gut, or some sort of visual disturbance. When I feel these “auras” coming on I know that anything, and I mean anything can soon follow. I am used to the gait issues, the feeling of being off balance, tremors, and all the oh so wonderful impairments of movement. What I never anticipated was that at certain times I would develop a great fascination for numbers. Take a moment and examine your surroundings. Numbers are all around you. They are on your computer, on your clock radio, on the call numbers of your library book, and glowing from your see in the dark remote control. If you are out and about they are on signs, on the speedometer of your car, and on the zillions of license plates whizzing by. And I have had more than several MS episodes where I cannot get the numbers out of my mind.
It is like my mind is super focused on retaining the sequences and order of numbers. And when they all bombard me at once, it is a great euphoric explosion of information. During these “number” times I feel downright excited over numbers. Imagine the scene of going to a coffee shop with a friend. My mind cannot escape the numbers on the cash register. I remember each item rung up. I am a human register tape. And what’s more I simply must repeat the numerical sequences I see.
"Chai tea $3.36
"One blueberry muffin $1.96
And so on. And not being the mathematical genius type, I simply parrot the incoming information. As I repeat the total of our coffee house expenditures I smile. My friend who is no stranger to neurological disorders, having three children with epilepsy, looks at me most curiously.
“What is it that you are doing there?” she asks cautiously.
“Just repeating numbers. It is one of my new MS things.”
“Ooooh I see,” she says without really seeing at all.
I begin to realize that my behavior is a bit strange but I can’t seem to stop the urge to repeat numbers during these “spells”. At these times I have great empathy for my son who has autism. Early on, before he could even speak words, he recited numbers. This fascination has not died over the years and now he connects numbers with certain things. “Fives” remind him of churches. And the numbers, seven and nine are reserved for trains. I sometimes wonder if God has given me Multiple Sclerosis so that I have more understanding for my son’s way of thinking.
Along with the numbers game, I also have had episodes of echolalia. Echolalia is a term used primarily to describe how some people with autism will repeat words and phrases said to them in order to process language.
There are times when I can make no sense of conversations or things said to me. During these times I will hyperfocus on certain words or phrases. For example, if someone were to say to me, “I am so sorry you are having these MS symptoms” I may focus on the word, “sorry” All of a sudden I cannot put the words of the sentence together to mean anything at all so like grasping for the proverbial needle in a haystack, I search for meaning with one word.
I will then repeat the word, “SORRY.”
But then the real fun begins as my brain attempts to shuffle through my internal card catalog looking for all references to the word “sorry.”
“SORRY is a game I played as a child” I might shout out.
“Sorry seems to be the hardest word…an Elton John lyric.”
And then I might also pick out words which sound alike.
“A sari is a type of Indian dress.”
As you can imagine, this all leads me to no more comprehension of what was said than putting the words through a meat grinder. This symptom seems to me, a way for my brain to make a feeble attempt at processing language in the midst of mental chaos. Or it can be made into a fun drinking game.
One thing I can honestly say about having MS, it is never boring. Everyday leads me on a unique trip along my special neurological highway. As Betty Davis once warned, “Buckle your seat belt, it is going to be a very bumpy ride.”
Tag! Now you’re it! Please do tell us about your odd and bizarre MS symptoms. Nothing is too out of this world. Do tell all. Inquiring minds want to know!