Multiple sclerosis: "I enjoy my life, even though it's different”
Published Jul 29, 2021 • By Candice Salomé
Nathali57, member of Carenity France, has had multiple sclerosis since she was 21. After a period of incomprehension, she was able to pick herself up again.
What pushed her to seek a diagnosis? What was her diagnosis experience? What changes has she made in her life to be able to live life to the fullest?
She tells us everything in her testimonial!
Hello Nathali57, thank you for agreeing to share your story with us here on Carenity.
First of all, could you tell us a bit about yourself?
Hello, I am 49 years old, married and have 2 kids. The eldest left for college last year and my 13-year-old daughter is still at home. I love nature.
How long have you had multiple sclerosis? What symptoms prompted you to seek help?
I was diagnosed with MS in 1993, when I was 21. I only had a tingling sensation which disappeared within a few weeks (during exams), and dizziness a few months later (after a wedding and some hot days).
Was it a difficult diagnosis? Did you consult any specialists? How did you feel when you received the news?
I only consulted my primary care doctor after the various tests were done.
I couldn't write properly at the time and then I had to go off to a training course just after the period of dizziness.
For me at the time, these symptoms were harmless and related to fatigue. I didn't understand why my doctor admitted me to the hospital for a spinal tap and then an EEG (electroencephalogram) and an MRI, without ever mentioning MS.
The radiologist came to see me after the test and asked how I was doing. I had no symptoms at the time. It was my mother who was worried because she saw the other people leaving his office quickly, while I had taken longer.
I only saw a neurologist one month after the MRI, he simply told me "We don't treat an image on an MRI", nothing else.
And it was my doctor who informed me of my diagnosis when I stopped by his office to pick up a doctor's note for sports, with the only advice to "hurry up and have children" when I was both single and in my last year of studies.
In retrospect, I was in total incomprehension. Even though I told him that I was familiar with MS... in reality I only knew it by name. I started understanding what having MS meant little by little when I found out that I couldn't continue to donate blood, while watching a news report on TV... There was no internet at the time, I didn't search any further and told myself that I had to continue with sport and hiking while I could.
How often do you have flare-ups? How intense are they and how long do they usually last? What symptoms do you experience in the day-to-day?
My flare-ups were frequent at the beginning (2 per year) on top of a stressful job, lack of sleep, etc.
The optic neuritis disappeared in a few days following a cortisone drip. My case was finally taken up by a neurologist who gave me one of my first treatments: betaferon.
I started working part-time and didn't have any more flares for several years.
However, they came back after the birth of my second child and after I stopped the beta interferons.
Today I suffer mainly from balance problems, fatigue and neuralgia. I have a cane, that's all.
What impact has MS had on your professional and private life? Are you still working?
I am lucky, I knew about my illness before I met my husband, before the kids were born.
We quickly chose to work part-time, to have time to rest, for my and the kids' medical appointments.
I still work a little, which is essential for me to maintain a social life and to exercise the neurons.
Do you have anyone who helps you manage in the day-to-day? Do you need any specific tools or aids?
I have a home aide and have our groceries delivered to our house... just in case, in case of a flare-up, but I can manage on my own.
What helps me most is my car with an automatic transmission.
How did your friends and loved ones react when you were diagnosed? Do they understand your MS and what you're going through?
I don't remember any particular reaction, I was young, and I was only sick "on paper" as I had very few symptoms?
My parents live far away and are older and sicker than me.
I relied on the kid's nanny or on "my crutches" (the home aide and grocery deliveries).
Once 7 years ago my parents had to come help out after I was hospitalized for a bigger flare-up.
I only let my employer and coworkers know 9 years ago. I don't remember who exactly, but someone said "this doesn't change anything from what life was yesterday" - for them or for me?
Did you have to adjust your lifestyle in any way?
I haven't had to make any big changes. I try to have a healthy lifestyle and eat a varied and balanced diet. I try to stay moving, I don't smoke or drink.
The essential supplement for MS prescribed by my neurologists is vitamin D.
What do you think of the medical or psychological support you've received?
I've moved house a lot, so I haven't needed much or the same type of support at different times in my life and during my illness. Today, I have found a good balance.
What treatments have you tried? Were or are they effective? Did you experience any side effects?
After 15 years on beta interferons (which were effective despite the constraint of the injections) and a few years on nothing at all, I have now been taking Tecfidera as background treatment for 6 years, (effective with aspirin 100 and trimebutine for side effects). I'm also on two treatments for neuralgia. My list of prescriptions is getting longer, but I handle them well.
But I feel that physical therapy is still my best treatment with no side effects. I feel better, more energetic, stronger.
My years without treatment are still causing me after-effects today.
What are your plans for the future?
To continue as long as possible like this. Helping my kids prepare for their future, my parents' future... I have the same plans as many of my coworkers and friends of the same age.
What do you think of online platforms for patients like Carenity? Have you found the advice and support you're looking for?
I wouldn't be as well off today without Carenity.
I have found the right people and the right advice when I needed it.
It from Carenity that I understood that I needed and thus began a more "active" relationship with my medical team. I asked for physiotherapy sessions from a skeptical doctor who only saw MS as a neurodegenerative disease.
What advice would you give to other members living with MS?
Be active according to your ability. Adapt yourself and your life to your needs!
Don't look for (and find) the worst on the internet... Research is progressing, and so is hope with Sativex*.
*Sativex is an oral spray authorized in the UK, Europe, and Canada containing two chemical extracts derived from the cannabis plant (THC and CBD) and used to treat symptoms related to moderate to severe spasticity caused by MS. A Phase 3 trial studying the safety and efficacy is ongoing in the US.
A final word?
"LUCK?" I've had a lot of it! MS has also given me the chance to listen more, to be more understanding, to appreciate life even though it is different than what I could have imagined.
Many thanks to Nathali57 for sharing her story with us on Carenity!
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