My story

The Mysterious Symptoms of Multiple Sclerosis – Part I

Also known as the disease of a thousand faces, multiple sclerosis is famous for differing from one MSer to another. Its symptoms are manifold and complex, and I am no exception.  My MS “career” has been filled with more or less extravagant ones, starting with the most devious of them all (“Aren’t all of them?”).

Everything was still okay in the autumn of 2004. Our class went on a couple of days’ hike. I was in good shape both physically and mentally (“If you don’t count in your laziness and rebellious spirit.”). I was even one of the best long-distance runners in my class at that time (“Not to brag too much!”). However, in early 2005, this was about to change.

Coordination and balance

Loss of coordination and problems with balance were the most obvious alarm that something is wrong with me. All of a sudden, I started having these problems with almost every activity I did. Even a short walk from bus station to school required an effort!

But it wasn’t me who “pulled the trigger” to finally see a doctor. Interestingly enough, it was actually my PE teacher after seeing my uncoordinated running (“if you can still call that staggering along the track running”). My running style resembled that of a drunken stork!

My running style resembled that of a drunken stork!

My physician made a basic neurological examination – you know, the one with the reflex hammer and one-leg balancing test. My reflexes were too intense, and I couldn’t stand still with my eyes closed. After describing my other problems occurring in the last half of the year, I got a “direct ticket” to the neurologist’s.

Did you say other problems?

Along with progressive loss of coordination and balance, I also started to feel dizziness and vertigo. This was (automatically) accompanied by blurred vision and sunlight sensitivity. I recall coming into class one day, all exhausted. Our English professor handed out the test and I couldn’t read a single word on it. The words were all blurry and fuzzy, and there’s no way I could make anything out of them. I freaked out, of course! The panic overwhelmed me, and in the end, I couldn’t even finish the test.

These other symptoms have been less visible and sneakier, seemingly unconnected, absolutely confusing, and so much more difficult to explain. They might be related to my other chronic diseases diagnosed in my childhood (uveitis and juvenile rheumatoid arthritis), or they could have been easily attributed to puberty-related reasons, like stress, dehydration (“You mean hangover?”), hormones, lack of sleep, etc.

And here we come to one of the most frustrating MS symptoms I’ve been “blessed” with (together with the majority of other MSers): fatigue!


When you turn 18, your main goal in life is to try, experience and achieve everything. Because, you know … everything is possible! But fatigue made this “everything” so much harder for me. For instance, going for a super quick cup of coffee during the main school break in the old town of Kranj (“the capital of Slovenian Alps – a fact of utmost importance!”) was suddenly no longer manageable. Nor was the one hour-long walk home we used to take when missing our last bus after going out on a Friday night. 

But I have never taken this as a tragedy and neither have my friends. We simply just adjusted our activities because we all wanted to do things together. Nobody excluded me because of my sudden disability for which I will always be grateful to them.

Back then, I had to work a summer job at the local factory.  One day, I started my shift in a completely ordinary fashion, but a couple of hours into work, I simply couldn’t walk across the hall anymore because I was too tired. My legs just didn’t want to carry me any longer. “WTF is happening to me?!”, I was devastated and confused. But the next day, I woke up like nothing is wrong. Like nothing had happened the day before. It was so easy to simply believe that everything is going to be just fine.

First snow
First snow 2020

Numbness in my legs

Looking back at it now, it’s kind of adorable which words I chose to describe the symptom I later found is called numbness. I described it as “a doughy feeling in my fingers and shins”. And then I continued this awkward description by adding, “You know, it’s like your skin is trapped in a plaster cast. (Like I could know how that feels like because I had broken so many bones by then – NOT!) If I touch the skin on my legs, it feels like a very distant pat.” I’ve always been known to have a unique sense of expressing myself in the most vivid way.

“If I touch the skin on my legs, it feels like a very distant pat.”

Tricky and mysterious

The above were the main symptoms I dealt with in the first months following my diagnosis, and I’m still struggling with them today. Every day. They’ve become a part of my life, a part of me.  I’m not saying that you get used to these symptoms, but you will learn to live with them. Accept them to the extent that they don’t or no longer define your general well-being.

Because of their tricky nature, not one person will experience them in the same way. Because they are so hidden and unknown to us, everyone will describe them differently. And wait for it – because this scary little monster comes with so many different symptoms, some fellow MSers might never experience them at all!

That’s why it is so important that we talk, write and read about them.

Multiple sclerosis is one hell of a mysterious disease and its symptoms can be quickly misinterpreted. That’s why it is so important that we talk, write and read about them. Want to know more about my symptoms? I’ve already drafted a bunch of intriguing new posts on this topic and will try to finalize them ASAP. So, stay tuned and stay with me!