Fact: Everyone will have different a different journey when it comes to MS symptoms.
For every case diagnosed, each individual will experience different characteristics and phases of the disease.
Although many people have MS, you must be aware that your body is different than the others, and to find what works for you is a process unique to other people with MS.
It began with numbness in my right leg, but I felt tired all over. I also started having bladder dysfunction issues.
When I was diagnosed with MS I was 39 years old. At the same time, my father was diagnosed with lung cancer, and was hospitalised. The prognosis was not good. I couldn’t deal with his illness, and at the same time with my MS diagnosis.
After my first neurological consultation, things were clear. Most of my “tattoos” (how I refer to MS lesions) were in my left cerebral hemisphere, and others along my spine.
I remember my first MRI. It was the start of my MS notetaking. According to my records I’ve experienced different symptoms beyond my MS.
I’ve experienced diplopia, a visual defect in which a single object seems in duplicate, or double vision, caused by incorrect fixation or abnormalities in visual system. But most curious symptom I had was absent sensitivity in my right hand.
There were times that I couldn’t felt without some of its nerve endings. One time I was frying potatoes and I spilt hot oil on my right hand, but there was no pain. At that time my son was 9 years old and after this episode he started to say that his father was like “The Incredibles”.
Once we begin to keep track of the typical features of our own MS—the way it presents itself, with the right support from our doctors—we can learn to manage our own unique form of MS the best we can.
Noting your symptoms and making sure you’re aware of disease progression is also important.
There may be long periods between consultations. But when we get the chance to talk to our neurologists, we must be able to communicate our symptoms, as well as any needs and challenges we face due to changing symptoms. This is important for our care team to track where our MS is.
In my case, I noted the fact that bladder dysfunction was becoming an issue. I’ve become self-motivated to deal with this issue. Beyond this, I also record my daily moods as well as my diet.
These types of notes help me, and my care team, keep track of my MS.
And now that our phones have become such helpful devices, I use mine to record my critical information, to understand my MS behaviour better and overcome any issue which could affect me leading the life I want to lead.
Becoming more familiar with my MS is the best way to get the life I want. This new journey is one I’m still getting used to. And I know that everyone with MS can achieve the same results, as long as they keep track of the important stuff along the way.
Fatigue is the one MS symptom that has had the biggest effect on my daily life. When I was first diagnosed almost ten years ago, life revolved around being utterly exhausted or just about getting by with the help of a few double-shot espressos.
My old routines were crumbling, and I soon realised I could not continue in the same way.
By understanding that and realising what was realistic for me, I had slightly more energy in the morning, I slowly started to restructure my day-to-day.
I started, and finished, work earlier than before. I got through important paperwork and emails first thing than rather than wait until the evening. And I built in rest days, as and when I could.
During peak fatigue times, friends and family would come to my house for a catch up rather than arrange to meet in a café; and as such, I was never entirely isolated.
I’ve found that by including plenty of time outdoors in daylight, some gentle exercise, and a balanced diet, I can more easily manage fatigue. I can also experience weeks or months with increased energy and then have a huge wave of fatigue once more, but I am confident I can now cope.
I was diagnosed with MS more than 16 years ago.
In this time, I’ve had a lot of relapses. I lost control over some of my facial movements, I’ve had optical neuritis, and my walking abilities have been impacted. Not to mention the fatigue, pain, and some cognitive and mental health problems that I have had to deal with.
Over the years my life has changed because my body has changed. Going through all of these experiences has encouraged me to live more consciously, and to strive for health despite my MS. I have structured my daily work to suit my needs and my life with MS. I have learned to say “No,” and to ask for support when I need it. But above all, I now listen to my body and mind. And have chosen to reach out to a psychologist, to help me find my way when things get rough.
Today, I feel good. My life is joyful. I have loosened up and tried to get rid of the rigid systems that hold me back. I still experience fatigue or insomnia and stiffness. But I can walk again, I can go hiking, doing bike rides with my e-Bike. Being active is key for my physical and mental wellness. It also helps to reduce fatigue and allows me to sleep better.
I have always tried to develop my own personal strategies to allow me to relax. And I’ve also begun to use digital health solutions to track my symptoms. Theses app have allowed me to learn more about my MS and keep track of everything much easier.
These last 16 years have been challenging. But I’ve come to realise my experience has given me knowledge, which is key. It is important to know more about living with MS and to reach out to those with knowledge about brain health and progression, like our doctors. As well as learning strategies to help us live better with MS from others who might know more.
All newly diagnosed, and experienced patients need to keep improving their knowledge, so that we can keep learning, and keep living on our own terms with MS.
When I was diagnosed with MS, I burst out crying. Even though, at that time, I didn’t really know how much weight those two letters carried.
The thing with MS is that everyone’s journey is unique, complicated. Not only that, but every person’s MS will also evolve at different stages as the disease progresses and as time goes on.
What’s been really helpful for me has been staying in touch with those people I could learn some useful tips from. People in the MS community in my city that share my disease, even if they don’t share my exact symptoms.
I also feel like I have connected with those who share their stories on social media, people who are there to listen to mine too, without trying to solve any of my problems. We make each other feel seen and listened to.
Over time, you learn the best thing you can do for your MS symptoms is sharing them with your care team. And letting them know about any relapse or specific questions or fears about progression.
It’s important to try to find reliable MS sources which you can rely on, taking into account that this disease is not the same for you in two different moments of your life, let alone two different people.
These days everyone can tell their story, which is great. But it is the job of every single person to make sure you can trust the information you’re taking in, especially living with a disease like MS.
What it is important is not trusting just the first thing that pops out on the internet because it is probably going to be misleading (yes, I am talking about Dr. Google): if you have any questions please go to a proper professional or a trustful source