If you ask the folk saying, multiple sclerosis is the disease of a thousand faces: inflammatory lesions in the brain and spinal cord can cause a wide variety of neurological abnormalities depending on the location where they occur - in other words, the thousand faces. This complicates the diagnosis and management of the brain disease, which usually appears in young adulthood and accompanies the respective patients throughout their lives.

However, the thousand faces do not only show in the disease itself. Multiple sclerosis occurs in a wide variety of people,

each dealing with it in their own individual way. The encounter of this neurological disease and the eventful developmental phase of young adulthood brings to the fore not only the management of the disease itself, but also the way in which the disease can and should be integrated into the personal life story.

This means moving away from the medical thousand faces of the disease and toward the everyday life of the individual on whom the disease strikes. Listening to individual patients and learning how to deal with the disease can help us here. How does a life encounter diagnosis and therapy? How is it changed by it? Of course, no two medical histories are alike, yet only such a discussion can provide both patients and therapists with important insights regarding how to deal with the disease.
This approach is still a major challenge for all of us. The goal must be to ensure that medical progress reaches the patient, that the patient can make well-informed, conscious decisions, and that we manage to let the patient live his or her life despite the disease.

I hope that Nele Handwerker's book can help us to follow this path. In her non-fiction book, she shows what her individual path has looked like so far. In the process, we learn about important processes in the management of multiple sclerosis. We know that it is a long road, yet we can see from Nele Handwerker's story what has already been achieved in recent years. Above all, I wish the non-fiction book to fulfill its purpose: to inform and support.

Prof. Dr. Tjalf Ziemssen,
Head of the Multiple Sclerosis Center of the University Hospital Dresden, Senior Physician and Deputy Director of the Neurological Clinic

Dear Reader,
Perhaps you are still at the beginning of your journey, have been living with the diagnosis for a long time, someone close to you has multiple sclerosis (MS) or you simply want to learn more about this disease. In any case, I hope that this book will give you hope and confidence, comfort, or suggestions on how to deal with the disease. That would make me very happy.
With this book, I want to show that life with multiple sclerosis can be very beautiful. For me it is clear that this includes regular visits to the neurologist, necessary examinations, a disease-modifying treatment (DMT) and certain adjustments to my lifestyle. Because MS is a very serious disease.
I am deliberately starting my personal story before my first episode to show you the fears I had at the beginning. The fear of not being loved, not knowing what MS meant for me health-wise, and perhaps being discriminated against or pitied by others. Over the years, my confidence grew that I could live well with MS.
For me, the past 15 years have been an exciting and intense journey and so far MS has not prevented any of my personal goals. On the contrary, it has taught me to live more consciously and to do good for myself. I worked in the U.S. for a year and a half, did my first skydive there, and snowboarded down the slopes in the Rocky Mountains. My vacations took me to Australia, where I went diving in the Great Barrier Reef, to Cuba when Fidel Castro was still alive, to the active volcanoes of Iceland, the dry paradise in Namibia and ancient temples in Japan.
I started doing yoga, which made me more flexible and emotionally stronger. For my job, I traveled to Asia several times and gained insights into the professional and private lives of Japanese, Chinese, Koreans, Thais and Malaysians.
I've been writing books since late 2015 and this one is already my sixth publication. And best of all, I found the love of my life and since the end of 2018 we are proud parents of a wonderful daughter.
I cannot see into the future, but I am very confident that my life will continue to be happy and content and that things in my private life will move me more than the disease itself.
Multiple sclerosis is called the "disease with 1,000 faces" because it is different for each person. I have told my story here. There are at least 999 others, including many more positive examples.
I am convinced that I contribute to the positive course of the disease with my attitude and lifestyle. I make use of the levers that are available to me. For me, these include a healthy diet, exercise, brain jogging and meditation. As far as possible, I avoid stress in the sense of excessive demands. I also have a basic therapy that suits me and I follow it consistently. I attach great importance to a happy and fulfilling family life and try to resolve conflicts instead of suppressing them.
If you are a patient or a family member, I wish you only the best on your way and hope that the diagnosis also brings you good things in life, allows you to live more consciously and hardly or not at all restricts you. If you are simply interested in multiple sclerosis and would like to learn more about the disease and a way of life, I wish you an interesting and informative read.
In the coming years, more effective therapies will certainly be found. Perhaps even broken nerve pathways can be repaired in the foreseeable future.
The ever-improving networking between physicians, scientists, therapists, and institutions in the fight against MS and its effects will continue to bear fruit. I am sure of that.
One example is the "Multiple Sclerosis Management" master's degree program starting in Dresden at the beginning of 2020. The students come from various professional fields, including physicians, pharmacists, therapists, scientists and nursing staff. During the four semesters, they are trained to become MS specialists while working, mostly learning digitally. The goal is to provide patients with treatments based on the latest knowledge, without delays of many years. This includes starting basic therapy as soon as possible after diagnosis. This is because early intervention has been shown to inhibit disease progression.
By the way, there is a glossary at the end of this book with the most important technical terms, which are marked with an asterisk in the text when they first appear: Simply Explained for Non-Medical Professionals.
Now I wish you a good time with the book about my journey with multiple sclerosis and hope that I can give you strength and courage with it. If you are one of those interested without a direct connection, then hopefully your curiosity about this disease will be satisfied.
By the way: Ten percent of the profits from the book sales go to the Dresden University Medical Foundation to further advance research and comprehensive care for MS patients.
Best wishes for your health and life in all aspects,
Nele

I was 22 years young and had been studying media management in Mittweida for a year. On weekends, I often went to my hometown of Dresden, where I had a job and liked to go to bars and clubs with my friends in the evenings. My biggest worry was that someone else might show up at the party wearing the same outfit as me.
I enjoyed my studies and had a lot of variety. It consisted of media theory, business, and media technology. The subjects were broad, ranging from journalism to media psychology and business administration to technical and physical fundamentals.
I lived in a one-room apartment in a building complex affectionately nicknamed “Alcatraz.” Since it was a manageably large university of applied sciences, I knew my 60 fellow students by name within four weeks. Most of the professors could also call us by name after a quarter.
On Fridays and Saturdays, I worked as a student trainee for a mobile phone provider to earn enough money for my leisure activities. This included going to bars with my friends in Dresden’s Neustadt district. Afterward, we often went to parties together with house or techno music for dancing. I liked drinking strawberry daiquiris or prosecco on ice.
I usually only saw my then-boyfriend at the time at the parties at night, sometimes behind the DJ booth.

One year had passed since the inflammation of my optic nerve. The comparison MRI was due, as agreed at that time after completion of all examinations at the University Hospital in Dresden. I felt good and was not worried at all about the examination. Instead, I was thinking about how I would get an apartment when I received the acceptance for the mandatory internship in Munich.
In a good mood, I hopped onto the couch. Unlike the first time, I had headphones on. I relaxed and listened to classical music while the MRI hammered, beeped, and rattled around me. After about 20 minutes, the couch came out of the tube again. I got dressed and went back to the radiologist, who was a good friend of the family.
But instead of a cheerful greeting, he faced me, looked at me seriously, and said, “Nele, I’ve looked at the images right away, and unfortunately, I don’t have good news for you. There are new lesions* visible. This means that the diagnosis of multiple sclerosis is certain. With this activity, I strongly recommend you start a disease-modifying therapy.”
What? How? It couldn’t be. The disease was ruled out last year. There had to be a mistake. My eyes were burning. Cold sweat broke out, and I felt panic spots appear on my neck.
He looked at me worriedly and asked if I was okay.
“Nele, I’m sorry. But I wanted you to hear it from someone familiar. I’m sure your neurologist will discuss it with you again in more detail.”
He gave me a brief word of encouragement before he had to evaluate the images of the next patient.
All sorts of thoughts flashed through my mind: could I finish my studies? Was it even worth it anymore? How much longer could I do sports? What kind of therapy did I have to do now? Did he mean cortisone? It had already given me a full moon face after seven days. Would I eventually look like the patients in my neurologist’s waiting room? Would I have to see her more often now? How much longer could I live a self-determined life? What kind of job could I still do with the disease? How could I have multiple sclerosis when I felt and looked fine? I did not understand all that.
I stayed at the doctor’s office for a while until I was able to drive again. After all, the drive back to my parents’ house took about 40 minutes.
Somehow, I arrived home, even though my perception was muffled, and I had to keep pulling myself together to pay attention to the traffic.

Three days later, the official evaluation was due at the neurological ward of the university hospital. The senior physician spoke of the McDonald criteria that were now fulfilled and confirmed the diagnosis. The new inflammatory lesions in the MRI left no doubt. I had multiple sclerosis.
She pointed me to a study I could participate in if I wanted. It was testing a new drug to treat multiple sclerosis. For this, I would have to inject myself every day. Two of the three groups received a drug, each in a different dosage, and the third received only a placebo drug. So, there was a 1 in 3 chance that I would inject myself for nothing. And I hated injections. Plus, I would have to keep regular appointments at the hospital to document my health status. I would have to deal with the idea of having MS every day.
I didn’t ask any questions during the conversation. It was just all too much for me at that moment. Since I hadn’t done extensive research a year ago, assumptions were haunting my mind. I didn’t want to be in a wheelchair. I wanted to play squash, swim, bike, and snowboard. I wanted to be independent and live without limitations of any kind.
Back home, the questions flooded my mind: Why me? What had I done wrong? What was the point of eating healthy if it didn’t help? Not to smoke, not to take drugs, and to drink little alcohol?
I searched the internet for articles about multiple sclerosis. Every piece of information I found online scared me. In addition, I often could not relate to the posts. And so, I preferred to ask the doctors in my family.
My uncle advised me not to participate in the study. He thought I shouldn’t be a guinea pig and be exposed to the psychological stress that such daily injections provided. Besides, the uncertainty would only put additional stress on me that I might not get the real drug at all.
My aunt told me about several friends and acquaintances who had received the diagnosis many years or even decades ago. They had relapsed at very long intervals over several years and were then treated with cortisone, but otherwise, MS hardly affected their lives. And they were not impaired in their movements or otherwise limited. That calmed me down, and I could think more clearly again.
I declined to participate in the study. I did not inform myself further about therapy options. I wanted to push the topic far away from me. No books. No research on the internet. No self-help group.

Compared with the 2004 MRI, the 2009 MRI showed two new lesions of inflammation and one existing lesion had increased in size. I hardly noticed anything at the time and thought I was healthy. In retrospect, I certainly had problems with fatigue* syndrome.
The next MRI in December 2010 was to prove how well the disease-modifying therapy (DMT) was working for me, which I had been using for a year. The results were good. My MS seemed to be asleep, thanks to the DMT. No new inflammatory lesions had appeared, nor had the existing ones grown. This was great news. The injections were worthwhile and helped me in my fight against multiple sclerosis.
From then on, every two years, I had a cranial MRI to check the status of my MS and the success of the therapy. They assessed if new lesions were appearing and old ones were still active or inactive. Fortunately, the MRIs also showed in July 2012 and December 2014 that the disease was dormant and the so-called lesion load* was stable. So, my neurological reserve* was spared, and I hoped that it would be enough for my life and could fully compensate for the few relapses that occurred if it continued as well as it did. That would be great. The positive results relaxed me and helped me continue to find a good way with MS. Still, I stuck not to telling anyone new.
Once a day, I had to think about MS when I injected myself. However, my body rarely reacted intensely to it anymore. Every few months I would have flushing with intense redness of my cheeks and fast heartbeat, but it would pass after 10 to 20 minutes. A few hardenings in my thighs and buttocks remained for a long time. When I accidentally injected into one of these indurations, the active ingredient did not reach the subcutaneous* tissue but tried to distribute itself in the fat and connective tissue. Then, either thick wheals formed since the macrophages had difficulty getting through the connective tissue and literally pried it open, or the contents of the syringe sprayed across the room when I removed the injector. The latter particularly annoyed me because despite the syringe being set and felt, my body had not received a protective dose. The first three times it happened, I got a new syringe. But after the injection often failed even the second time, I let it go and the dose was dropped on those days. The problem was mostly because of my inner tension. The few times I was so tense, I couldn’t resolve the condition within a few minutes. It took more time. The better I developed a feeling for myself and my body, the less often it happened. For one thing, I was rarely extremely tense anymore, and for another, I postponed injecting at such a moment until later, when I was relaxed again.
I continued to avoid short skirts, dresses, and pants or wore colorful tights with them. Firstly, I didn’t want to risk sunburn on the injection sites, and secondly, I didn’t want to show my bruises or welts. The marks often stayed for two weeks until they disappeared.
I regularly asked my neurologist about new medications, as I hoped to eventually get an alternative to injections. However, his recommendation remained to stay on my DMT. Finally, my MRIs were stable, which showed the success of the therapy and was by no means the case for all patients.
However, in July 2015, he had a pleasant message for me. A new dosage of my DMT was approved. Instead of 20 mg daily, there was 40 mg, which only had to be injected three times a week. That meant injecting on Monday, Wednesday, and Friday, but I was off on Tuesdays, Thursdays, and weekends. What a relief. It was also good for my skin since it had longer regeneration phases. Especially in the beginning, I enjoyed not having to inject for four days.

And there was a second reason why I stayed with this DMT. It was possible to get pregnant on it without any worries. After the first trimester of pregnancy, it was usually discontinued, but a few patients even took it for the full nine months. So, it was a good option as my desire to have children grew. The drug had been in use long enough for me to assess the risk. Switching to another drug would have required protection first, and not all of them were suitable for getting pregnant. So, I stayed on the syringes, true to Alf Ramsey’s motto: “Never change a winning team.”