Multiple sclerosis: "I fight every day to be able to maintain my professional career"

Hello Obélix, thank you for agreeing to share your story with us here on Carenity. 

First of all, could you tell us a bit about yourself? 

I'm a man in my fifties and am married with children. I am lucky to still be able to work with very significant disability. My EDSS is 7.5. I work in local government in an office as an assistant, but I would like to change jobs.

I'd like to transition to job helping people with disabilities. Since I have been in a wheelchair, I have seen shortcomings in terms of accessibility and equipment in all areas. I would like to change people's views, to be respected as a PRM (person with reduced mobility) and to have a job that I am passionate about. I now need to find the right people in my professional environment who could help me make this transition. 

How long have you had multiple sclerosis? What symptoms prompted you to seek help? 

I was diagnosed with MS in 2004, but I had it long before that. It started with fatigue, tingling in the legs, repeated sprains and facial paralysis. At first, they weren't sure and just diagnosed me with "an inflammatory pathology of the central neurological system", which was eventually determined to be MS.

Was it a difficult diagnosis? How did you feel when you received the news? 

The diagnosis for me was not very clear. I started with a treatment: 22 mg of Rebif®. Thanks to research on the internet, I started to understand MS and what I would be facing.

I had a hard time accepting my MS, which the doctor informed me of alone. Every night for at least a year, I was anxious, afraid of ending up in a wheelchair. 

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? 

When I was first diagnosed, I would have flare-ups every 2 years. They would last about 3 weeks and would be treated with corticosteroids.

The symptoms consisted of extreme fatigue and temporary paralysis in my left leg. I would have regular MRI scans and almost every time I had new lesions.

I've been on Gylenya since my last relapse, and I haven't had any new lesions on my brain or spinal cord. I'm currently in a manual wheelchair. I also just changed neurologists. My EDSS (Expanded Disability Status Scale, a scale developed to measure a person's disability) is now 7.5. I have secondary progressive MS. 

What impact did MS have on your professional and private life? Are you still working? 

I can't walk anymore, but I fight every day to maintain my professional career. Professionally I'm on the back burner. I am currently working from home with very limited tasks. It has been suggested that I do a skills assessment to confirm the job I have been hiding from my management until now. The position, to help people with disabilities, does not exist in the community where I work. 

Do you have anyone who helps you manage in the day-to-day? 

I have someone who comes and helps me in the mornings during the week to wash and get up, and at the weekend it's my wife who helps me. 

How did your friends and loved ones react when you were diagnosed? Do they understand your MS and what you're going through? 

I hid it from my family until 2010, except from my very close friends and my wife and children. To tell them or not to tell them? They are not all understanding... I have lost some close friends and family members around me because of it. 

Have you had to adjust your lifestyle in any way? 

Yes, at the beginning I did, but now I live and eat normally. 

What do you think of the medical or psychological support you've received? 

I found it very average. I was not always listened to when I had a relapse. Some of my flare-ups were not treated with corticosteroids.  

What treatments have you tried? Were or are they effective? Did you experience any side effects? 

I have had the following treatments: 22 mg of Rebif®, Copaxone® and Gylenya®. The Gylenya has been very effective. I have no more flare-ups, but no more recovery is possible, and I am in secondary progressive MS. 

What are your plans for the future? 

For now, I would just like to be happy with my wife and children, to protect my family unit from the disease. I'd like to help people with disabilities like me, PRMs (persons with reduced mobility), with regard to accessibility, but also people with cognitive or sensory problems. I'd like to make an inventory of all the needs for all disabled people in relation to accessibility, leisure activities, etc. 

What do you think of online platforms for patients like Carenity? Have you found the advice and support you're looking for? 

Yes, I think they're great. I feel like I'm not alone with my condition anymore. I can share about any problems I encounter and share my personal experiences to help solve problems for other people like me.

What advice would you give to other members who are living with MS and have been recently diagnosed? 

Try to live normally, listen to yourself, enjoy the day you're living. 

A final word? 

Don't let yourself be taken advantage of. Rely on aids and support systems available to you. Fight so that we are all respected despite our differences. If you need, think about the 2005 Disability Act*, which is rarely enforced, and use it to try to move forward. Continue to adapt and live in spite of your health, which can sometimes put our morale at its lowest.

PS: If you have ideas to improve accessibility of parks and gardens, furniture, playgrounds, buildings, roads for children and adults for all disabilities, please let me know. I'm trying to make an inventory to share with people who can potentially help us MS patients, PRM, the blind, deaf etc.

Good luck to all of you and let's try to stay hopeful! I want and we must hope for new treatments. Why not with messenger RNA? 

*Loi numero 2005-102 du 11 février 2005, a law passed in 2005 in France outlining and defending equal rights and opportunities, participation and citizenship of people with disabilities.

Many thanks to Obélix for sharing his story with us on Carenity!

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