Multiple sclerosis: "It is very difficult to accept everything that is happening to you"

Hello Sylvia, thank you for having accepted to share your story with us here on Carenity.

First of all, could you please tell us more about yourself?

Hello, I am 33 years old, I am a single mother of a 6 year old girl and we live alone. My mother helps me. I am a computer engineer, but initially I wanted to move to the city to work when my daughter gets older. Now I can't stand even an hour in front of the computer, my migraines are getting the better of me. That's why I'm preparing for the civil service exams now. It's not what I wanted, but it's a job and I have to earn a living.

How long have you been suffering with MS? What symptoms prompted you to see a doctor?

In August 2020, when I was working as a waitress, I had a big drop in blood pressure, and I fell, so I had to go home. The next morning I noticed that I couldn't see very well. I made an appointment with my ophthalmologist who told me that there was nothing wrong with my eyes, that it must be the optic nerve because of the drop in my blood pressure and that I should go to a neurologist for an MRI scan.

He gave me a letter to Social Security, but they didn't call me back, so I went to a private clinic. I was lucky, it was the same as if I went the public one. They made me have an MRI and when I went to get the results, they told me: "It's not the optic nerve, you probably have multiple sclerosis". And then I had to go though thousands of tests and analyses. The diagnosis was only confirmed in July.

How many healthcare professionals did you see before your diagnosis was finally established? What did you feel then?

It took me over a year to come to terms with it. I was only seen by my neurologist, but it's very difficult to accept everything that's happening to you and all the changes you have to make to your life.

How frequent and intense are your flare-ups? How long do they last? What are your main symptoms?

I haven't had any new attacks, so I can't say anything about it. My daily symptoms are constant fatigue, balance issues and memory loss.

What treatment are you taking? Are you satisfied with it? 

I have been taking Copaxone® since January and I am very happy with it. I don't take anything else, except some daily pills for depression, high blood pressure, cholesterol and also folic acid. That's quite enough.

What has been the impact of MS on your personal and professional life? Are you still working?

As I said before, I am preparing for my exams. I don't work, but I help my mother in a bar she owns. But sometimes glasses fall out of my hands, I have to write down the orders or I forget them, and I can no longer carry the tray, which was my favourite thing to do.

How do you manage your daily life with MS?

I'm trying to do what I used to, but with my new limitations. I'm trying to go out more, because before my depression episodes prevented me from doing so, but now I know where it comes from. I was even taken off an antidepressant. And little by little I'm becoming me again.

Did you have to adjust your daily habits (diet, physical activity, etc.) due to your MS?

I try to do some sport and at least one long walk a day.

What do you think about medical and psychological support that you have received since your diagnosis?

The neurologist was very good, but the main support came from my mother, and also from my psychiatrist and psychologist.

What are your plans for the future?

That would be to find a job where I can do everything and live one day at a time.

What do you think about online patient communities like Carenity? In what way do they help you?

It helps me to see how I'm doing on a day-to-day basis and to read about other people who are going through the same thing. Because I don't know anyone else in real life who would be suffering from MS.

What advice would you give to other people affected with MS?

Live for today, not for tomorrow or yesterday, but for today!

Is there anything else you would like to add?

Live your life and enjoy the little smiles that life offers you.

Many thanks to Sylvia for sharing her story!