Multiple sclerosis: "I'm enjoying every moment life has to offer!"

Hello Jen711209, you have agreed to testify on Carenity and we thank you.

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

My name is Jennifer, I am 37 years old, married and I have a 10 year old daughter.

How long have you had multiple sclerosis? What symptoms have alerted you to consult a doctor? 

I was diagnosed in 2013 following my delivery. My daughter was 8 months old at the time. I woke up with a numb cheek and a lot of fatigue. 

Was the diagnosis difficult? Did you consult many specialists? How did you feel when you were diagnosed? 

I was diagnosed following an appointment with my GP who sent me for an MRI scan. The diagnosis was relapsing-remitting MS, which was confirmed by a spinal tap.

When the diagnosis was announced, the world fell apart around me, I had a baby to deal with, everything was going crazy in my head...

How does multiple sclerosis manifest itself? What are your symptoms? How often do they appear? 

Multiple sclerosis was very aggressive... I had many attacks over a few years with sensory, motor, visual and speech problems...

What was the impact of the disease on your professional and private life? 

I could no longer manage my life. I was a secretary and I was dismissed for inaptitude 3 years ago. Since then, I have been able to bounce back!  

I had to look for myself, to learn who I really was... I got involved and I am now a young diagnosed referent within the Association Sclérose en Plaques de Saône-et-Loire. 

Where are you now? How has the disease evolved since your diagnosis? 

At present, I am receiving an Ocrevus treatment (infusion every 6 months) which has stabilized my MS. I have adopted a more serene lifestyle, which allows me to be more active despite walking problems. I enjoy all the moments that life offers me, I feel fulfilled and in harmony with myself and my convictions. 

How did you judge/experience the medical and/or psychological support? 

I thank the medical support: a neurologist who listens, good rehabilitation, physiotherapy for stretching and muscle reinforcement...  

One should not hesitate to remain an actor of the disease and its treatments...  

I decided to get psychological support in 2013 to help me accept this new life. 

You have published a book "A Talking Soul". What is it about? Why did you decide to write about the disease? How did you feel when you wrote this book? And when it was published? 

I have always loved writing! I share my feelings to convey a positive testimony, to prove that you can change the way you look at multiple sclerosis in my book "A Talking Soul, MS For You!"  

I dedicate this book to my daughter who has always been my primary driving force!  

It relates my journey through characters so that everyone can identify: patients, family, health professionals... By writing, I was doing my final therapy! I transcribed all my emotions, a challenge for me with problems of concentration, fatigue...  

When it was published in several bookstores (Fnac, Amazon, Cultura...), I was so proud to transmit my message and to be able to help other people who no longer believe in it! It was the accomplishment of all my efforts. 

What are your plans for the future? 

My plans for the future? Always enjoy life to the fullest!  

To share my experiences with other patients, in order to accompany them.  

I will soon be training as a patient-partner so that I can set up activities for people with MS, activities that any active person does.  

And make the MS voice louder and louder! 

What do you think of patient exchange platforms like Carenity? Do you find the advice and support you are looking for? 

The exchange platforms are indispensable today to find support, advice and exchange between patients.

What advice would you give to members also affected by multiple sclerosis?

The advice I would give is NEVER give up on your dreams that were buried deep inside you, it is up to you to make them come true! 

When you want to, then you can! Adapt your life but never put it in brackets, it goes by too quickly!

A big thank you to Jen711209 for her testimony!     

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Take care of yourself!