MS: “It's deeply linked to stress, so it's important to take care of your emotions.”

Hello, and thank you so much for agreeing to share your story with Carenity.

First, could you tell us a little about yourself?

I’m a 25-year-old woman, in a relationship for nearly three years. I had just moved in with my partner when MS showed up at my door, and since then, I’ve had to move back in with my mom (though I’m still with my partner).

I’ve always loved animals, I have two cats and a dog, and they’re part of the family. I’m extremely close to my mom; she’s not only my mother but also my best friend, and now, my caregiver too.

Like most people my age, I enjoy social media, watching videos and series. But unlike many others, I don’t go out much, I need to rest because of the fatigue.

I like sharing, helping, supporting, and advising others in the chronic illness community. I’m naturally a stressed, anxious, and impatient person. Before MS, I even had a phobia of needles, so ending up in the hospital and leaving with an injection treatment was quite the challenge!

You have multiple sclerosis. At what age did you first notice symptoms, and what were they?

My first symptoms were mainly chronic fatigue, long before my diagnosis. I’d say around age 14 or 15. I wasn’t diagnosed until I was 24, and at the time my doctor told me the fatigue was just due to adolescence.

What led you to finally consult for MS? What tests did you go through, and how many doctors did you see?

It started with spasms in my left hand and a loss of strength in my left arm, to the point where I couldn’t hold my phone or turn the steering wheel. I saw a GP in an emergency appointment, who told me it was just the heat. Finally, I went to see my doctor, who ordered a brain scan and then an MRI, which showed an abnormality but no clear diagnosis. I was waiting for a neurology appointment.

Still waiting for that consultation, I developed facial paralysis on the left side and was hospitalized in an emergency. Fun fact: at first they thought I was addicted to drugs and that my tremors were from withdrawal.

They ran extensive blood tests to rule out infections, then brain and spinal MRIs, and a lumbar puncture. I was diagnosed according to the McDonald criteria with relapsing-remitting multiple sclerosis, pseudo-tumoral form (large lesions compared to “normal”).

I’ve already seen many doctors in less than a year since my diagnosis. Honestly, many weren’t very competent, kind, or understanding (though not all of them, thankfully). My hospital experience was pretty tumultuous, and I’m still looking for a professional I can trust enough to leave my future in their hands.

How did you feel when you were diagnosed? Were you expecting it? Had you heard of MS before?

Honestly, I didn’t feel anything. They gave me the news right after a lumbar puncture when I was the sickest I’d ever been. In fact, I was expecting it, I had a gut feeling after my very first MRI and had already started researching the disease.

So the diagnosis only confirmed what I already knew deep down. I immediately had a few questions, but the doctor didn’t have time to answer them until the next day. I already knew about MS because my grandmother has a condition that was long mistaken for MS, though hers isn’t demyelinating like mine.

What treatment are you on now? Are you satisfied with your care, medically and psychologically?

Since my diagnosis, I’ve been followed by a physical therapist (at my request, strongly recommended by several doctors) and a speech therapist (also at my request, otherwise I would’ve left the hospital without support for my speech difficulties). My speech issues have improved compared to the beginning, but I still struggle with articulation, memory, and concentration.

Both my physical therapist and speech therapist are young, attentive, understanding, and serious. I couldn’t ask for better!

When it comes to my neurologist, things haven’t gone well. He’s the main doctor for MS, so it’s important to have someone competent and attentive. I had two appointments in the first year (because of my form of MS, usually it’s just one appointment a year). But I feel like my symptoms aren’t taken seriously, no real treatment options are offered, and he shows little empathy. That’s why I keep changing neurologists, hoping to find one I can really trust.

Psychologically, I’ve handled things fairly well because I was expecting the diagnosis. But to avoid a drop in morale, I asked the hospital if they had psychologists available after diagnosis. The neurologist made it clear that it was “just MS” and that in 3 to 6 months I’d feel better. So instead, I reconnected with a hypnotherapist I had seen when I was younger after a trauma. That has helped a lot. I wanted to be proactive rather than wait for depression to set in.

How frequent and intense are your relapses? What symptoms do you live with daily? What treatment are you on?

So far, I’ve had two relapses, one in August 2023 and one in October 2023. I can’t say how long they lasted because I’ve kept some of the after-effects.

Both were severe. The second one affected my speech, which made it especially shocking and exhausting. My pseudo-tumoral form of MS is characterized by very strong, disabling relapses, considered more severe than average.

My biggest daily symptom is fatigue, it’s very disabling, and my biggest struggle. Because of the facial paralysis, speaking, articulating, or repeating myself when I stumble on words takes much more effort, which causes even more fatigue. It’s a vicious cycle.

Other symptoms include lingering spasms in my left hand, difficulty pronouncing certain words (especially when I’m tired), fainting spells, migraines, cramps, memory and concentration problems, and trouble managing anger, I get impatient and irritable much faster.

Since my diagnosis, I’ve been on Kesimpta, a subcutaneous injection once a month.

What impact has MS had on your personal and professional life?

The impact has been significant. I’ve always lived with fatigue, but since the relapses, it’s no longer manageable, it’s near-constant exhaustion. Of course, I know I’m lucky to still walk, but the fatigue still takes a huge toll. I no longer enjoy many of life’s little pleasures, like outings with friends or hobbies, because I have to save my energy for therapy sessions and daily tasks.

It’s also affected my relationship. I moved back in with my mom so she could help me get to appointments and so I could rest in peace and quiet in the countryside. I no longer drive because of my tremors, so I depend on others for transportation.

Professionally, it’s been hard. When my first relapse hit, I had just started a temporary job that was supposed to eventually become permanent. But I was quickly put on sick leave, and the company ended the contract when it expired. That permanent contract was important for me and my partner because we were planning to buy a house in the near future.

I also tend to avoid people (friends or strangers), because comments about my health or jokes (even if not meant badly) about how I stumble over words really upset me. So once again, I distance myself to protect myself and avoid being unpleasant.

Why is it important for you to share your experience with MS? What message would you like to pass on?

I’ve always enjoyed helping and supporting others, so speaking about my illness came naturally to me, and it also inspired me to plan a book about MS, which I first thought of when I was in the hospital being diagnosed.

What truly motivates me is when people say that my words have helped them, given them strength, or made them feel less alone. That’s what drives me, and that’s my mission. For me, talking about MS isn’t just about raising awareness, it’s about showing people that they’re not alone and that sharing experiences can really make a difference.

I want to spread kindness and support within the chronic illness community. MS is so complex that not everyone, even loved ones, can understand it. That’s why creating spaces of sharing is so important. Many of us live with different symptoms, some more psychological, others more physical, but we all face the same illness. My goal is to encourage people to live as fully as possible while coping with MS, and to help make invisible symptoms and challenges more visible to others in order to break stereotypes about disability.

What are your plans for the future?

First, I want to quit smoking and take up regular exercise, for my health. I’d also like to take the time to write and publish my book through a publishing house, so it can reach as many people as possible and provide accessible, reliable information about MS.

I’d love to get back to living like before, or at least be able to do as much as I used to. That includes finding a full-time job so I can plan for the future. And of course, I want to continue sharing and supporting others in the MS community.

What advice would you give to other people with MS?

Listen to yourself, both your body and your mind, but try to keep a balance. I’ve seen people amplify their symptoms or what they read and hear about the disease because of fear of its progression. I think this kind of fear can actually make things worse.

Each patient and each case of MS is different. Just because someone else has mobility issues or bladder problems doesn’t mean you’ll face the same ones.

I believe MS is also very connected to the psychological side. Both of my relapses followed periods of intense stress, and I know others who’ve experienced the same. For me, it’s crucial to learn to manage emotions and especially stress.

I’d also remind people that alcohol and smoking are harmful in general, and inflammatory on top of that.

And finally, for those of us with invisible symptoms who sometimes get hurtful comments, don’t waste your energy trying to explain to people who don’t want to understand. But if those comments come from your medical team, or if you feel misunderstood, don’t hesitate to change doctors. No one knows better than you what you’re living through.

A final word?

I wish good health to everyone, with or without MS! I hope that one day, we’ll see a cure for MS. Thank you for taking the time to read my story.

A big thanks to our member for trusting us with her story.

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Take care!