MS diagnosis testimony: I feared it was cancer

By Labinot Demi

My name is Labinot Demi, I live in Kosovo and I was diagnosed with multiple sclerosis in 2015. But I had been experiencing related symptoms since 2013. This is my personal story. Article for EMSP’s Membership Newsletter.

At first, I put the MS symptoms down to stress. I was President of the football club FC Kosova Vushtrri who won the Kosovo Super League in 2014, a premiere for the city. In parallel, I was managing a marketing agency with more than 40 employees. I resigned from the club and got rid of the stress factor but soon afterwards I started fearing I had cancer. I was experiencing groin pains and I was sure something was wrong with me.

‘The worst night of my life’

In August 2014 I became a father but on that very evening I couldn’t feel joy. I urinated blood. Instead of becoming the best night of my life, it turned into the worst night of my life.

I visited more than ten urologists in my region and outside the country but received no clear verdict. I became depressed and anxious. I couldn’t be on my own and I was lucky to have the great support of my wife. I went on therapy but I was still feeling fatigued.

God and Dr Google

In September 2015 I started having long headaches. I first experienced them in the Milan subway so I assumed that they were normal for underground travel. Only they didn’t stop where the metro did. When I returned to Pristina I finally went to see a neurologist who recommended an MRI test. The radiologist told me of some lesions but I did not receive the diagnosis until the next day. The night before I did not sleep: I went on the internet and learned of more than 1,000 types of cancer associated with neurological disorders. The next day I had to go through two more hours of waiting in the neurological department before the doctor finally told me it was multiple sclerosis.

So I went from praying to God I didn’t have cancer to becoming best friends with Dr. Google who taught me a lot about MS. I then visited several medical centres in Macedonia, Serbia, Kosovo, Italy and other countries.

The Association

I consulted other neurologists and ran the MRI test four more times. The doctors told me I didn’t have to start therapy immediately since I only had a small active lesion. The symptoms also became less frequent.

Wanting to raise awareness of this disease, in 2016 I started a national Association for Multiple Sclerosis. My aim was to bring together people who have the same problem. I began by helping others with information and some medication. I also listened to those who were diagnosed before me. We met four times in the first six months, including to mark World MS Day in May. The Association has grown to 20 members. Our ambition for the near future is to join international MS networks and platforms.

As for me, I continue to work and I have changed my lifestyle. I play football three times a week, I control my diet and every day I learn something new about MS.