Multiple sclerosis: “I haven't had a flare-up for many years!”

Hello Zabka33, thank you for agreeing to share your story with us on Carenity.

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

Hello, I am 55 years old, with a 21 year-old daughter, a 27 year-old son and two granddaughters, soon to be three, and a partner who has shared my life for 14 years. I love reading, especially personal development books, music and concerts, spending time with my family and friends, and our annual holiday in our little corner of nature on the Atlantic coast.

You have multiple sclerosis. How old were you when you experienced your first symptoms and what were they? 

When I was 27 and going through a difficult period in my life, one morning I woke up with a dark spot blocking my vision in my left eye. The verdict: optic neuritis!

Four months later, I got pregnant and at the same time suffered a flare-up with pins and needles (paresthesia) and even the beginning of facial paralysis. 

What led you to see your doctor? What tests did you undergo to reach your multiple sclerosis diagnosis? How many doctors did you see? 

My GP referred me to a neurology department because of my problems the first time. I had a whole series of tests, including a spinal tap. The second time (at the beginning of my pregnancy), I only had a spinal tap, and my case was taken on by a neurologist in Toulouse. 

Then we moved to Bordeaux where my case was taken on by a neurologist at the university hospital, who referred me to a city practice. I then looked for a new doctor on my own, and my new neurologist suits me perfectly. 

How did you feel when you received the diagnosis? Were you expecting it? Had you heard of multiple sclerosis before? 

Until then, no one had ever said the word "multiple sclerosis" to me. My diagnosis was made clear at the beginning of my second pregnancy, during a precautionary check-up. 

I fell apart, imagining myself in a wheelchair with two small children. 

Knowing little about this disease, I looked up "myelitis" beforehand, as that was the only term I had read in my previous medical files.

What care or treatments are you undergoing now? 

I have two physiotherapy sessions per week and ten minutes of exercises and stretching every day when I wake up (on my own). I also have one annual appointment with my neurologist (unless there is a particular need), and one appointment every three months coupled with a blood test with my micro-nutritionist. 

How often do you have flare-ups? How intense are they and how long do they usually last? What kinds of symptoms do you experience in the day-to-day? What treatments or medications do you take? 

I haven't had any exacerbations for many years. More frequently but not every day, I tend to have spasticity and fatigue when standing for long periods or walking, as well as balance problems. 

As for treatment, I'm currently doing physiotherapy sessions and food supplements: vitamin D, complex multi-vitamins, etc.

How has multiple sclerosis affected your personal and professional life?

I have lots of support in my personal life, but I sometimes feel frustrated that I can't do more, and can't do some things myself. 

On the professional side, as I no longer drive and use a wheelchair outdoors. I've had to reinvent this part of my life by working independently from home. 

How did your loved ones react to your diagnosis? Do they understand what you're going through?

Their shock and grief were immediately replaced by support. My children, now that they are grown up, confide in me that they were almost angry with me when they were little, because they couldn't do activities like other kids do with their mothers. My own personal relationship with the disease, which I've worked on over the years, helps those around me a lot. I like to say that I am not ill, I have a disease. It's a form of resilience. 

Apart from your medical care, do you use any alternative treatments or medicines? What are they? What health benefits do they provide?

Alternative treatments have been part of my daily routine for more than 4 years: dietary supplements prescribed by my micro-nutritionist according to my quarterly analysis results. 

I am less tired, I see improvements in my sleep and mood, I have better endurance and mobility (noted by my physiotherapist). I am no longer, or only slightly, prone to seasonal ailments, I have better digestion, etc.

You're an entrepreneur in the field of health and well-being. Why did you go into this field? What exactly do you do? How did the idea come about?  

At first, I would take dietary supplements and liquid aloe vera that a friend recommended to me. When I started seeing good results, I wanted to share the virtues and excellences of these products with others, especially my family and friends.

As I have always paid a great deal of attention to my own well-being, I am now a consultant for health and well-being solutions and products, aimed at all those who want to maintain or regain their good health and well-being.

This allows me to work from home, at my own pace, when I want, with the possibility of welcoming and accompanying new clients, whatever their objectives and their origin (professional or geographical).

Can you tell us about your products? How do you think they can help certain chronic illnesses?

I work with one of the world's leading aloe vera companies for over 40 years.

They have a wide range of aloe vera-based wellness products going from drinks, dietary supplements, hygiene and beauty products, and cosmetics.

To get the maximum benefit, I recommend drinking aloe vera gel on an empty stomach when you wake up in the morning. Try to choose a "pure" or natural product containing at least 90% aloe vera, stablised and cold extracted. 

Aloe vera is nicknamed "the plant with a thousand virtues". Among the 300 species, the most effective is aloe vera barbadensis Miller, the variety used by the company, renowned for its incomparable nutritional richness.  

It can be consumed as a complement to medical treatment but in no case replaces your medical treatment. It is advisable to ask your doctor for advice before taking it. 

These are, of course, complementary solutions to help ease chronic illnesses. Aloe vera acts in the long term, hence the need to consume it as a therapy over time. Each case is studied individually. 

Finally, what advice would you give to other Carenity members living with multiple sclerosis?

The main thing is to take care of yourself by resting when necessary, by not neglecting sleep, engaging in regular physical activity as much as possible, following a healthy and balanced diet without forgetting good hydration. 

Depending on your environment and your approach, you can supplement this with relaxation techniques, wellness treatments and massages, meditation, supplements to make up for deficiencies, reading, games that stimulate memory and cognition, and why not discussion groups... 

Any final thoughts?

Fall down 7 times, get up 8!   

Many thanks to Zabka33 for sharing her story with us on Carenity! 

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