This is a little article from me, Eva, giving you insights into my MS disease. Prior to my diagnosis, I never really knew what MS is. I feel the general awareness and perception of MS is just: so wrong. I’ll be honest, I didn’t know that a young 25 year old female could be affected with MS. I believe that the majority doesn’t realize this at all. Typically, I face two types of responses when I tell someone I have MS:
A. It’s not that serious or bad enough to care I guess (weirdest reaction ever, but okay)
B. A straight death sentence, and apparently everybody thinks you are d.o.n.e. with life. (Also very weird, but ..okay)
I strongly believe the only way for people to get it and maybe have a better feel of how to react when somebody comes forward with their MS diagnosis, is to educate a little on the topic.
By the way, do not (really, there is no need to explain this, just don’t) answer like option A or B. This applies to any diagnosis honestly.
So, let me explain what MS is and maybe this can help raise awareness in a way, at least to some people.
Multiple Sclerosis is a very unpredictable disease with a wide range of symptoms that can come, go, linger, or worsen. As you can imagine, the inconsistency of symptoms unfortunately adds tremendously to the emotional and mental stress of one affected. Feeling stereotyped, not cared about or misunderstood is one of the most damaging things a patient can experience.
MS is an autoimmune disease of the central nervous system, and thus a disease affecting the brain and spinal cord. The central nervous system is the supreme control center for all our voluntary and involuntary movements and sensory perceptions. Voluntary movements describe our intentional motor function. An example for this would be, reaching for the coffee pot to refill your mug. (Disclaimer: While we all love a good coffee that makes our morning a little okay-er and makes us a little more able to face todays’ BS, it’s not ideal if you suffer from anxiety. Caffeine affects our neurotransmitter balance and can raise stress hormones, thus increasing anxiety. So please be aware and tell your inner coffee junky to chill a little. Also best regards, seems like we have something in common)
On the other hand, there are involuntary movements, which basically means you breathe without actually remembering to breathe. Your heart pumps blood through your body without you remembering. Basically, our body is balancing all of our internal systems to keep us alive (very nice, right). However, the symptoms that could appear due to an impaired nervous system could be tremors, spasms and muscle weakness. Other symptoms could be tightness, stiffness or ‘pull’ of muscles, this is what spasticity means.
As if that wasn’t enough, often our immune system attacks our body’s own nerve cells. Just like a little war against myself inside my own body.Let’s go a little deeper into the structure of nerve cells to better understand the process.
Our nerve cells are insulated by a layer called Myelin. You can think of this as a layer that takes care of the signals going through our body. It is like a nice long blanket covering our nerve cells, to make sure the quality of the signal passing through remains on the premium level of quality. In MS, this substance is damaged when attacked by our own immune cells, resulting in slowed and off-target stimulus transmission. These inflamed areas harden over time, which is called sclerosing. Now we know where the name multiple sclerosis comes from. The average age of affected patients is 30 , but as you can see, even with 25years you are not safe from this.Women are affected twice as often as men (totally not fair in my opinion). While there is no specific gene that causes the disease, there is a clear family history. So if your dad, your grandpa or your aunt has MS it could be very possible that you or your siblings will get MS as well. Thus, the risk of disease is significantly increased in direct relatives compared to the general population. But as of today’s research state nobody really knows what the demonstrable reason for MS is. But what are the causes of getting MS? Yes you have guessed right. The causes are still unclear. It is assumed that several factors play a role in the development of MS, such as smoking, vitamin D deficiency, infections, but also genetic predisposition. MS is more common in countries with less sunlight and a temperate climate. Others assume an infection with pathogens that have structural similarities with the body’s own cells. Thus, the immune system fights the pathogen but also the body’s own structures and therefore leads to an immune reaction. No two courses are the same. Each one is different and has different symptoms, you will never know which one will hit you. And that is why MS is also called the disease with 1000 faces.
Nevertheless, there are some symptoms that suggest MS. I wanna tell you more about the symptoms I had. First I recognized visual disturbances. Which meant that I could only look through a narrow tunnel. I had tunnel vision. I can tell you, that was very scary. Possible symptoms are also seeing the wrong colors. In addition, pain may occur during eye movements. After the tunnel vision hit me , 4 weeks later I had a disturbance of the general muscle function. I couldn’t move my right arm. That moment was the first time I recognized that there was something wrong with my body. I had one month between my thrusts, but it took me 8 months to get the diagnosis MS because, as i told you, at first i didn’t know that this was the beginning of MS. Comparatively speaking, this is even a quicker way
80% of sufferers describe sudden fatigue, listlessness and weakness. The so-called fatigue syndrome. An organized daily routine, targeted relaxation exercises and rationalization of the body’s own forces can make it easier to deal with fatigue syndrome. It is insidious symptoms like these that delay diagnosis. What really helped me was my daily routine. I started the morning with a nice yoga session and a good tee (instead of coffee :)). After that I had my breakfast and planned my day. It helps – especially for mental and spiritual health – to write down 3 things every day for which you are grateful. I really started to listen to my body and give it time when my body needs it. About half of all MS patients also develop cognitive disorders, i.e. concentration weaknesses and memory loss, especially of the long-term memory. Further symptoms can be incontinence, sensory disturbances such as tingling, numbness, and sensory dysfunction, as well as speech and swallowing disorders. In addition, chronic pain, better explained: pain that lasts for a long time, or acute pain. Pain that comes on suddenly, can also occur.
Therapy: After I was diagnosed with MS, I started to look into the best therapy options. This was not easy, as there are numerous therapies available to treat MS patients. Especially at the beginning of the MS diagnosis, therapies that are individually tailored to the patient can help patients delay the course of the disease by years and therefore stop potential disability progression. As with most autoimmune diseases, attempts are made to reduce the activity of the body’s own immune system without completely eliminating it. This is important so that the patient is not completely defenceless against pathogens. To get to know the therapy options, I would like to introduce the three types of MS therapy. The course-modifying therapy, the relapse therapy and the symptom-oriented therapy. Depending on the course of the disease or the stage, gender, age or even the desire to have children of MS patients, these therapies can be combined. Of course, each therapy is individually tailored to the patient.
a) Course-modifying therapy: Course-modifying therapy aims at the best possible freedom from disease activity. The aim is to prevent relapses as far as possible, or to reduce the number and severity, and to prevent progression of the disability. This form of therapy is based on two principles: In immunomodulation, the immune response in the body is reprogrammed by messenger substances or the communication between the immune cells is influenced. Immunomodulators restore the balance between immunosuppressive and immunostimulatory mechanisms and do not damage the immune system in the process. They may also be able to help rebuild damaged myelin covers and prevent scarring in the central nervous system. Immunosuppression, on the other hand, suppresses the function of immune cells so that they cannot damage the immune system. Immunosuppressants can be non-specific, i.e. inhibit more or less all immune cells, or specific, suppressing only certain components of the immune system.
b) Relapse therapy: The aim of relapse therapy is to stop acute inflammation in order to reduce the duration and severity of a relapse. For this purpose, so-called steroids in the form of preparations containing cortisone are used. Cortisone is an endogenous hormone produced in the adrenal cortex and has an anti-inflammatory effect. However, due to strong side effects, this is only used for a short time.If this is not effective, in special cases blood washing can be done to remove harmful components in the blood that contribute to the damage of the myelin.
c) Symptom-oriented therapy: In addition to the above-mentioned forms of therapy, symptomatic therapy can help to improve existing symptoms in order to increase the quality of life of people with MS. This includes medicinal treatment options, e.g. to relieve pain or relax muscles, but also non-medicinal treatments such as physiotherapy, speech therapy and psychotherapy.
After getting to know all these therapie options I started with the Course-modifying therapy. For me that was the best option in my state of MS. I started taking pills every day. And that totally works for me. I think that was also the first time when I recognised that I was sick.
Conclusion: MS is a disease that usually accompanies young patients throughout their lives. Some restrictions and cutbacks in life are to be expected, but believe me when I say it is not the end of the world…. But with the right therapy and the patient’s cooperation, multiple sclerosis is a very treatable disease (though not yet curable). You can start a family, live an independent life AND be happy!
There are also digital applications that can help you nowadays. For three years I didn’t trust them, but through such platforms I was able to meet other sufferers, exchange information and support others, but also be supported. In addition – and this is often underestimated – apps can help you get personalised information about your disease.
Beyond that, there is the possibility of meeting a digital twin who can help the MS sufferer to reveal the consequences of certain therapy measures like: How often will controls be necessary with this therapy, which controls will apply to me (MRI or blood washing)? The “Digital MS Twin” is based on various MS characteristics – such as parameters from functional tests but also neurological examinations, from imaging procedures, from innovative neurobiological and immunological data as well as from information about the patient’s life circumstances and plans, which are examined with the help of AI-based calculation methods. Patients should be encouraged to lead their lives in a self-determined way, in the spirit of patient empowerment, to change their lifestyle and thus improve their quality of life. It is therefore all the more important to detect MS at an early stage. The advancing digitalisation in the health sector, which mainly applies to digital applications, are therefore very helpful in monitoring neurological functions in a long-term and measurable way.