A journey to a diagnosis: Zuzanna from Poland tells her story in "MS in focus" magazine

Read the story of how Zuzanna from Warsaw, Poland found out she had MS and how she has learned to live positively: "I see life with a chronic disease as a challenge but it is not the focus of my life. I’m sick, but I choose if I give up or make friends in spite of the difficulties of MS."

I am 27 years old and work as a neuropsychologist, an anthropologist of culture and a journalist. I live in Warsaw with two cats, Mia and Ganesia.
I was diagnosed with MS two years ago, but I think it started in high school.

It was not until 2009 that there was a turning point. I was walking in the Tatra Mountains with my best friend, Monica, and amid the extraordinary landscape, at a height of 2,000 metres, I felt as if hundreds of small ants had passed over my body. I also realised that I could not control my gait. The strange feeling passed after a while.

Once I was home, more symptoms appeared – a strange shiver along my spine that would come and go, and my neck itched terribly. But, most disturbing, was my problem with concentration, attention and memory. My friends and family used to say I had a memory like an elephant, so when I started to forget the simplest things I felt like I ceased to know who I was. My other main symptom is depression which, unfortunately, has not yet been treated with any success. Sometimes I am better, sometimes worse. This is the life that I have learned to live.

Zuzanna

My diagnosis came about after visiting my GP, who referred me to an orthopaedic specialist because of the feelings in my spine. The orthopaedic surgeon arranged an X-ray and I waited for the results. “The X-ray is clear”, said the orthopaedic surgeon, “there is no problem with your spine”. “What about the numbness?” I asked. I was worried and confused but did not want to be a hyperchondriac. The doctor asked my age and then handed me a referral for a neurological consultation.

At my appointment with the neurologist, I was asked to close my eyes and to touch the tip of my nose with my right index finger, and then the left. I knew where my finger should go, but I touched my cheekbone instead of my nose. The neurologist then arranged for an MRI scan. I noticed words on the notes about MS and become very frightened.

At the MRI the radiologist said, “Do not move. Once it starts it is quite loud, but you will get used to it. Good luck”. I was left alone in a deafening and unpleasant tube. After a while, I heard a series of repetitive high-frequency sounds which sounded like 1980’s electronic music; a mix of synthesizer and bass guitar. Being in a closed, claustrophobic space seemed to make the time pass even more slowly.

I left the hospital feeling full of fear. Fortunately, I was not alone. My friend Irena was waiting for me. “Well, how was it?” she asked. I saw scientific curiosity in her eyes. “Sorry,” she said, “What did the doctor say? Do you have the result?” I replied “The result will be ready in an hour. I’m so hungry. Let’s go and eat”.

An hour later, Irena stood beside me and we watched the pictures of my brain. “At least you can see that I have a brain” I said to her, stifling fear with black humour. We smiled at each other but then I felt tears well up in my eyes. “Now what?” I asked.


For some, the diagnosis of MS is the end of the world. I would be lying if I said that I had no such thoughts. The fear that accompanied me in the first moments was enormous. I had just turned 25. Paradoxically however, MS started a new stage of my life. I started the battle for myself and so far I
am winning. My perspective has been changed by knowing other people with MS, gathering information about treatments and taking part in an experimental drug trial. The therapy is working, making me feel
positive and that life is not meaningless.

Thanks to organisations such as the Polish National Multiple Sclerosis Society, people with MS have an opportunity to establish a personal bank
account, and the right to collect funds for treatment and rehabilitation. Donations from friends, acquaintances and even strangers means that I
have enough money for treatment for six months.

It is not easy to open up and announce that you are sick. Most people do not know what MS is. However, I recommend that people with MS be
completely open. “Coming out” helps you feel free from unnecessary tension and stress. Some of the people I told drifted away, but nature hates a vacuum, so in a short time, there were plenty of people who wanted to help and just be my friend. This is a sign of sincerity above all.

It is also important to acknowledge and seek help for depression and cognitive problems caused by MS. I now use simple but effective strategies to focus attention on what is in the here-and-now. I remember words from a seminar: “Let us live beautifully, live actively, wisely, open ourselves to
new experiences, gain new skills, try to act and if it fails to get established, then try something else. Do not perceive life as a to-do list”. Thanks to
these words, I see life with a chronic disease as a challenge but it is not the focus of my life. I’m sick, but I choose if I give up or make friends in spite of the difficulties of MS. Good luck!

Contact the Polskie Towarzystwo Stwardnienia Rozsianego at biuro@ptsr.org.pl or www.ptsr.org.pl

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