MS and healthy - Claudia Brunner - E-Book

MS and healthy E-Book

Claudia Brunner

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  • Herausgeber: tredition
  • Kategorie: Ratgeber
  • Sprache: Englisch
  • Veröffentlichungsjahr: 2023
Beschreibung

Live self-determined - even with multiple sclerosis! The diagnosis can be frightening - but stick your head in the sand? Definitely not! Because there are many possibilities and ways how you can lead a happy and self-determined life even with multiple sclerosis. The only question is: where do I start? Which is the right path for me? This book clearly shows what options there are in addition to conventional medicine to positively influence the course of the disease in multiple sclerosis and to take your own health into your own hands. All proposed measures are scientifically proven. They also have the power to enrich one's life beyond the illness. Because MS is not the end, it is the beginning of a new chapter! What awaits you: * 9 Actionable Measure - "Healthy Living for a Healthy Living!" The book shows 9 self-implementable measures that can positively influence the course of MS. It summarizes the essence of several hundred scientific studies. All recommendations are easy to understand and implement! * A Personal Story - "From Diagnosis to Today" Accompany the author through her own medical history. You will find very personal insights from the diagnosis to experiences with fatigue and relapses, specially marked again and again throughout the book. * Background knowledge - "Conventional medicine and lifestyle complement each other!" Therefore, everyone affected should know about the disease and have access to information about treatment options. You will find chapters that explain MS, but also show various basic therapies and their effectiveness. Use these chapters to deepen your understanding of MS and as a reference and basis for discussion with your doctor.

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MS and healthy

Scientifically proven recommendations for an active life with multiple sclerosis

Disclaimer and general note on medical topics:

The contents presented here are intended solely for neutral information and general further education. They do not represent any recommendation or advertisement of the described or mentioned diagnostic methods, treatments, or drugs. The work including all contents has been prepared with the utmost care. Nevertheless, printing errors and misinformation cannot be completely excluded. The publisher and the author assume no liability for the timeliness, accuracy, and completeness of the contents of the book, nor printing errors. No legal responsibility or liability in any form can be assumed by the publisher or author for incorrect information and any consequences arising therefrom. All information corresponds to the state of knowledge at the time of publication.

The text does not replace the professional advice of a doctor or pharmacist and it may not be used as a basis for independent diagnosis and start, change, or termination of treatment of diseases. Always consult the doctor you trust in case of health questions or complaints! Never take medication (including medicinal herbs) without consulting your doctor or pharmacist! You should therefore never use the information provided here as your sole source for health-related decisions. If you have any complaints, you should always seek medical advice. The author assumes no liability for any inconvenience or damage resulting from the use of the information presented here.1

Dr. Claudia Brunner

MS and healthy

Scientifically proven recommendations for an active life with multiple sclerosis

Legal notice

© 2022 Dr. Claudia Brunner

Translated by Moritz Schmeil

ISBN Softcover: 978-3-347-72903-2

ISBN Hardcover: 978-3-347-72904-9

ISBN E-Book: 978-3-347-72905-6

Printing and distribution on behalf of the author:

tredition GmbH, Halenreie 40-44, 22359 Hamburg, Germany

The work, including its parts, is protected by copyright. The author is responsible for the content. Any use is not permitted without her consent. The publication and distribution are carried out on behalf of the author, who can be contacted at: tredition GmbH, Department " Impressumservice”, Halenreie 40-44, 22359 Hamburg, Germany.

Contents

Scientifically proven recommendations for an active life with multiple sclerosis

Preface

1. Introduction

1.1 My personal history with MS

1.2 Multiple sclerosis - What is it exactly?

2. Take health into your own hands – 9 building blocks for a good condition

2.1 Sun exposure and vitamin D

2.2 Sleep

2.3 Sports - Exercise

2.4 Meditation and stress management

2.5 Nutrition

2.6 Fasting

2.7 Handling stimulants

2.8 Psychology – therapy, networks

2.9 The Power of Connection - Social Life

2.10 "Cognition" - Lifelong Learning

3. The 9 building blocks in a nutshell

4. MS and profession

5. The next steps

5.1. Change habits

5.2 The conversation with physicians

5.3 Clarify and treat other underlying diseases!

6. Orthodox medicine

6.1 Explanations – Basics

6.2 Relapse therapy

6.3 Disease-modifying therapy

6.4 Symptomatic or concomitant therapy

6.5 Selected drugs of the course-modifying therapy

6.6 Overview of drugs - absolute vs. relative risk

7. Helpful information for relatives

7.1 Who bears the burden?

7.2 Empathy for the ill person

7.3 What can I do as a relative?

8. Conclusion

8.1 A healthy lifestyle or medication? A combination makes the difference!

8.2 Questions and answers

8.3 Reasons why a healthy lifestyle can be highly effective in MS

9. Closing remarks

10. Appendix

10.1 The author

10.2 Acknowledgement

10.3 Sources

10.2 Endnotes

Preface

This book is primarily aimed at all people suffering from multiple sclerosis and their relatives.

In addition, it addresses all those who would like to inform themselves about the disease in an understandable way. In particular, however, it is aimed at people who are looking for scientifically proven options in addition to conventional medicine to live better and healthier with their disease.

Very much of the available information about multiple sclerosis is difficult to understand or is limited to the medical aspect of the disease. There are countless sources of information about medications. But there is little that focuses on the person with the disease and recognizes that there are scientifically proven ways to positively influence the course of the disease beyond injections or tablets.

This book will fill exactly this gap. At the interface of conventional medicine and lifestyle medicine, it shows how each person affected can influence the course of his or her disease.

In this book, you will not find shamans, miracle cures, or homeopathic pellets.

What you will find, however, are scientifically tested and proven recommendations, which individually or even better in total can be beneficial for a better course of MS!

***

Since being diagnosed with MS more than 13 years ago, I have taken a rigorous scientific approach to addressing my MS over the years. Years of training and education in research at universities and also during my doctorate have not only trained me in this regard but also shaped me.

My path over the past few years has taken me not only to doctors' offices and hospitals but also to numerous libraries and journal databases to understand the latest research on MS.

As an economist who deals with issues of business management, I acquired a great deal of knowledge in the fields of medicine, nutritional sciences, and psychology over the years to understand the interrelationships of the disease and its treatment.

My focus has always been on ways I can personally influence the course of my disease. Of course, one can take medication and hand over the responsibility to a doctor. This was never enough for me; I wanted to understand everything and become active myself.

In the meantime, I have read hundreds, if not thousands of studies on MS and evaluated their quality and validity. In addition, I have attended various continuing education courses at the best universities in the world. Not only did I earn a certificate in nutritional sciences at the Stanford School of Medicine, but I also took a course at Yale University on the Science of Wellbeing and finally began a master's degree in psychology at Harvard, which will still take some time. One of my absolute highlights so far was a course in neuroanatomy at Harvard Medical School, where the brains of deceased people were dissected and MRI images were analyzed. Various other courses, such as Brain Health or Life Style Medicine as part of the psychology program, were also absolutely fascinating.

The most exciting thing about all my courses was finally THE one realization: All parts fit together into a whole. Each of these sciences, each of these courses has for itself something to contribute to the question of how I or better WE can live healthily.

Please take the time to benefit from my endless studies in the abstract.

Yes, there are ways to influence your disease course!

This book will provide you with scientific recommendations that each individual can implement for themselves.

It is a matter of my heart to provide every person affected with all the knowledge necessary to lead a healthy and self-determined life with the diagnosis of MS!

Structure

The book is divided into several sections. First, the introduction tells my personal story. After that, there is an easy-to-understand overview of the disease.

The main part of the book deals with nine building blocks for a good course in MS. Besides chapters on sports and medita- tion, you will find parts on nutrition, but also on mental health.

Each sub-building block is then summarized into a specific recommendation.

To facilitate the implementation of the recommendations, a chapter with the next steps follows.

In the course of MS, sooner or later you will have to (co-)decide whether and if so, which medication to take. The second large part of the book will therefore explain selected therapies as a reference and compact reference book. In addition, in each case, there are possible side effects, points to which one should pay particular attention, and finally the effectiveness of the therapies.

The following chapter is aimed specifically at relatives and answers some issues and questions that might arise.

The book concludes with the question of if and how conventional medicine and a healthy lifestyle can work together to achieve a healthy life with MS.

In the appendix, you will find the bibliography and information about the author.

Reader's Guide

"MS and Healthy" is a non-fiction book aimed at people affected by MS. Nevertheless, there are always personal insights and experiences. In addition, there are digressions for those who would like to know more and are looking for explanations of contexts. To meet your individual needs, the individual parts are marked as follows.

Personal experiences and my story are marked in italics and with the pencil.

Background information and further explanations for those interested can be recognized by the info sign.

1. Introduction

1.1 My personal history with MS

“Are you married?"Those were his first words.

With incredulous amazement at the unexpected question, I looked at the neurologist across from me and said, "No." For some reason he continued, "Then you should do it soon! You can also have children normally. I have numerous patients with children."

I was completely unclear what those words were about. They did not fit at all with what I had been going through the last few days. I was also far from planning any children or wanting to get married.

With my 26 years, I stood in the middle of life. I was a healthy young woman. After graduating from college, I started working for a consulting firm a few months earlier. I desired to have a career, travel a lot, experience different cultures, and simply enjoy life independently and freely.

My medical history took its ominous course at a personnel interview about two months earlier. I had been told, not very charmingly, that I was to lose my job.

The previous year, there had been a major stock market crash in the U.S., and the economy in Germany had also been affected. The result was mass layoffs, among others at management consultancies. I was one of them.

As suddenly as a knife thrust and just as sharply, a terrible pain drove into my head. I could no longer think clearly and soon ended the conversation. Still in the office, the pain shifted behind my right eye. An unspeakable feeling of pressure developed. I had to get out. Ibuprofen and a flood of tears relaxed me somewhat and so the pain subsided.

Unfortunately, there were still a few weeks left until the end of my contract, so I continued to go to work the following days. The next morning I opened the door to the office. As if on cue, the feeling of pressure behind my eye increased. I spent this and the following days in the office looking for job postings and printing resumes on expensive paper. Still, the pain got steadily worse.

Only lunch breaks and off-hours relaxed my head. Every remaining day of the current month repeated the increase in pain in the morning when I went to the office, the brief relief at lunch, and the gradual improvement after work. Although there were these periods of relief, the pain increased daily. The feeling of pressure behind my eye steadily increased, and by the third day after the consultation, I felt like my eye was going to pop out.

At this point, it was already clear to me that I would not last the remaining three months under these circumstances. Gritting my teeth, I handed in my resignation, gave up two months of salary, but in return had my freedom after another 28 days - and hopefully no more pain.

***

There I was, unemployed and taking painkillers. The hoped-for improvement and relaxation, unfortunately, failed to materialize. Throughout the day I still had significant pain and pressure behind the eye. It was much better than the week before, but I still had to see a doctor. So my first visit on Monday morning was to our family doctor. With the dia- gnosis of an acute stress-related tension headache and a sick note for the whole month, I left the practice full of hope for improvement and with a zest for action.

My boyfriend was living in New York at the time. Since I could write applications from there as well, the decision was made quickly. The following five weeks in New York were wonderful, I felt better. The pain was no longer so frequent and strong. In addition, I had a new pair of glasses made by the optician shortly before I left. My visual acuity had deteriorated somewhat. And so, I suspected, the wrong glasses had also contributed to my pain.

Unfortunately, the optician had probably not measured so well and soon my pain became more frequent again. I also saw increasingly worse with my right eye. I did not conclude that maybe something was wrong with my head or that I was ill. Even the ophthalmologist I visited indirectly confirmed my assumption that I had nothing wrong. Except for dry eyes, he could not recognize any problem in my eye.

With the increasing duration of the pain and a worse and worse visual acuity, the vague feeling crept in that maybe something bigger was wrong. But I still held on to every straw like the eye doctor's and diligently used eye drops.

Only about a week after returning from New York, I started at my new job. With a long weekend immediately ahead, I was still in my old city and the move was on the schedule for later. My boyfriend was also back in Germany by now and we spent the weekend comfortably in my student apartment.

It was a Saturday when I complained about very strong pain again. My right eye felt as if it was being squeezed out of its socket. At the same time, I could no longer read books with that eye. Everything was completely blurred. Gradually, I also saw different shades of red in my eyes. On the left eye most beautiful fire red, on the right eye rather a swampy brown-red. I was desperate and paralyzed.

My friend finally made the decision and forced me to go directly to the doctor. We drove directly to the eye clinic in Munich and arrived there at 5 pm. The wait at the hospital felt eternal and finally, the doctor certified me with a visual acuity of less than 60% and false colors. By this time I was in tears and begged him to tell me what I had. The only answer was that he would have to discuss it with the attending. Waiting again. Finally, I was called in and shortly told that I either had an inflammation of the optic nerve or "something" was pressing on it. I should also go immediately to the university hospital, perhaps I could be "pushed into the tube today".

At this point, I could no longer think clearly. I just begged my boyfriend to do something, I don't want a tumor in my head…

He kept his nerve and we immediately drove to the university hospital in Großhadern. In the emergency room, we waited for a very long time in a dreary room with ugly corridors. The following hours are for me as if covered with a veil. Today I can only remember a few details. For example, my friend tore open the findings from the CT scan so that I wouldn't have to wait for a second longer. That he got me a burger at 2 a.m. and how the neurologist took my nerve fluid.

Finally being told I had optic neuritis and to come back the next few days for an infusion. With the words:

"Find a neurologist in private practice" I was ultimately discharged.

And here we were. After a visit to the radiologist ("Oh you have a follow-up"), we sat across from Dr. Neurology. After the introductory question about whether we were married, a dry: "You have chronic inflammation of the central nervous system. I'll give you some brochures to read about therapies.

It didn't last five minutes.

That moment stuck in my head like a movie in slowed-down images.

I stood up. He had black designer plastic chairs in the office. The floor is antique and dark wood. I turned toward the door. Just over the threshold, I lowered my gaze to the brochures in my hand.

"Living with MS" was written on it. Film break …

I didn't know MS at the time. To me, it was a nebulous disease and I didn't know much more than that it was incurable and people were in wheelchairs. Despite everything, I tried to explain to my friend that I was quite happy now. Now I would at least know what I had.

After the appointment, my friend looked for a specialized neurologist in the area for me. This appointment was not far off and was no comparison to my first visit to the neurologist. The doctor took 1.5 hours to explain the disease, its condition, treatment options, and the like. That day MS got its name. My inner hamster was baptized. One of the few happy moments of these days was reading the package insert of my new medication. It said that it was derived from the ovarian cells of the Chinese hamster. And so I simply named the MS "My Hamster", which made it a little more tangible.

And so the hamster came into my life. As probably everyone can imagine, a bad diagnosis is a massive break. Even those affected or even relatives know this first hand. For me it was exactly that, my world was shaken from the ground up. Everything I had hoped to achieve and create was initially shattered. In addition to all the changes in my life - a job loss, a new job, relocation - this was a very difficult time for me.

Over the following years, I would have to struggle with many hurdles. One of the biggest was to accept that the hamster belongs to me and is a part of me. To come to this acceptance, I needed years. I took countless detours, cried torrents of tears, spent weeks arguing with my boyfriend, forced myself to perform, did not admit any weakness, and even denied the existence of MS at times.

Especially in the first years after the diagnosis, I had a wide variety of relapses and symptoms. In addition to numerous sensations, such as numb legs, tingling arms, numb fingers, and the like, I had to fight above all with renewed optic nerve inflammations in both eyes. In addition, my left arm was almost paralyzed and I suffered from severe fatigue and headaches every day. Every noon I was without energy for about an hour and was unable to think a clear thought. The lunch break was dragged out with a coffee every day, and I recovered on the worst days in front of the computer, staring like a zombie at any articles I could not grasp.

Over these years, the condition of my brain deteriorated significantly. By now I had more than 40 lesions in various places, including the spinal cord. The brain volume had already decreased and I was told not only once by doctors that my imaging suggested a severe condition after all.

I was given cortisone therapies several times, which additionally paralyzed me for a few days, and I tried different basic therapies. In the following years, I received five different medications. All of them had their specific positive as well as negative sides. With some, my MS came to rest completely and no new lesions formed. With others, I still had relapses. Some I had to stop because of sometimes severe side effects, others were simply ineffective.

In the meantime, my hamster and I have agreed on a peaceful co-existence, one could also say: a truce, which hopefully will last for a very long time. After years of struggle, I have also gone through some very serious changes for myself personally, both in my perception and in my life. For eight years now I have lived almost relapse and symptom-free with no major limitations.

Some of these changes have proven to be very helpful to me. Now that I am living a relaxed, balanced, and healthy life, I would like to share my findings and let others participate. I am passionate about encouraging and informing others who are affected that they have a part of their health in their own hands.

We can contribute a lot to a good life despite MS! MS is no longer a one-way street!

When I go to the doctor today, I'm usually greeted by nothing more than an astonishing look and often followed by the comment, "Your clinic doesn't really match the imaging." This may well mean something like, "When I saw the MRI images, I couldn't imagine you bouncing happily in the door with me today without any restrictions!"

But I do!

1.2 Multiple sclerosis - What is it exactly?

Short description

Multiple sclerosis (MS) or encephalomyelitis disseminate is a chronic, inflammatory disease of the central nervous system. A typical feature of MS is the appearance of lesions that result from the demyelination (demyelination) of nerve fibers. Depending on the location of the lesion, a wide variety of neurological symptoms are possible. The disease can affect both the brain and the spinal cord with a corresponding variety of symptoms. In addition to visual disturbances, sensory disturbances, headaches, bladder disturbances, and gait disturbances are common signs.

Various immunosuppressive and immunomodulatory agents can be used for treatment and modification of the condition, which can have a favorable influence on its course. Unfortunately, the disease is not curable at the present stage.2

Excursus – In simple words

Our brain functions as the "control center" of the human body and mind. It consists of various nerve cells, which in turn consist of a cell body and nerve tracts (so-called axons).

If, for example, a finger is to be moved, signals are transmitted from the corresponding brain region via the appropriate nerve tracts through the body to the finger.

Axons can be meters long and extend through the entire body - even to the little toe. This system works similarly to the transmission of electrical current via cable lines to the power outlet or onto the electrical terminal.

Unlike the transmission of electricity from the power plant to the terminal device, the transmission of information via axons works in both directions. Not only can the brain transmit the control command to the fingers, but sensory impressions such as heat, cold, or pain can also be transported to the brain. Movements can thus be coordinated and adapted to perceptions at incredible speed.

Similar to power cables, the axons are also provided with insulation. They prevent "short circuits" and ensure fast and unhindered transmission of information.

What is MS?

Staying with the image of the power cable, it helps to imagine a marten nibbling at the outer layer of insulation with its sharp teeth. At first, nothing will happen. But if he manages to expose one or more spots on the cable, the consequences can be quite dire.

In our body, the so-called myelin sheaths provide the insulation of the axons. It is precisely these myelin sheaths (i.e. the insulating layer) that are attacked or even destroyed in MS by inflammation in the body, like the power cable by the marten. The formerly insulated axon is now exposed at this point, which can lead to damage to the axon itself, but above all initially causes slowed or disturbed information transmission.

Depending on which cable or - in humans - which myelin sheath is damaged or which axon is exposed in the brain or spinal cord, the corresponding damage will become apparent. For example, if the areas in the brain where the information for sensory perceptions on the left arm is processed are affected, we will have disturbed sensory perceptions in that very area. The left arm may be numb, tingling, or heat and cold may not be easily distinguished.

Since our central nervous system is the control center of the whole body, different nerves can be disturbed and the effects are very diverse.

Although no two MSs are alike, some symptoms are very common. These are mainly fatigue, headaches, sensory disturbances, muscle cramps, and gait disturbances.

MS is a chronic disease, which means that there is currently no cure. It progresses in different ways. Most people with MS experience single episodes called relapses, which resolve in many but not all cases.

In the meantime, numerous medications can have a favorable influence on the condition. These so-called basic therapies are usually taken permanently to protect the body from further damage. In addition, there are relapse therapies, i.e. drugs - often cortisone - which are taken when new damage occurs.

Not only the condition is individual, but the prognosis and the therapy are also as well. Where one affected person has very great limitations very quickly, the other may notice little or nothing for decades.

Causes - where does MS come from?

At the present state of knowledge, the cause of MS is not yet ultimately clear. There are clusters in families, which could speak for a genetic component. One suspects a connection with different gene loci, such as in the HLA system (human leukocyte antigen system). However, there is no direct inheritance as in "classical" hereditary diseases. Nevertheless, the risk of children of patients with MS is increased.

Besides genetic factors, environmental factors are discussed as possible triggers or as contributing factors. These are mainly a lack of vitamin D and bacterial as well as viral infections. Very recent studies find evidence for a connection with glandular fever. This disease is caused by the Epstein-Barr virus and often occurs in childhood or adolescence.3 In addition, smoking, passive smoking, and obesity can increase the risk.4

Frequency and distribution (epidemiology)

MS is diagnosed significantly more often in women. The remitting form of MS (RRMS) is about 2-3x more common in them than in men. The primary progressive form (PPMS), on the other hand, is equally distributed across the sexes.5

Of interest is the high prevalence of the disease in Europe and North America, which may also suggest a link to light exposure (vitamin D). Overall, there are currently about 2.5 million people living with MS worldwide, the majority of whom live in these regions.6

In Germany, the prevalence is currently 150 sufferers per 100,000 population and 6-8 cases per 100,000 population are added annually.

Symptoms

As explained earlier, the symptoms of MS are completely individual and depend on the location, size, and type of lesion. Even lesions in the same location can result in differently expressed symptoms in different individuals. Because of the individuality of symptoms, it is often very difficult to definitively diagnose MS.7

Nevertheless, some symptoms are clustered in MS (in descending order):

• 90% fatigue

• 76% Gait disturbances

• 70% Sensory disturbances

• 63% Pain

• 61% Muscle cramps

• 54% Headaches

• 54% Depression

• 54% Emotional changes

• 51% of Bladder disorders

In many individuals, MS initially manifests as optic neuritis, disturbances of vision, or sensory disturbances, such as tingling or numbness, or gait disturbances. As the condition progresses, there may be an increase in symptoms, both in type and severity.8

Progress forms9

MS has several different courses. A relapsing-remitting (RRMS) variant is the most common, affecting about 85% of cases. This means that new symptoms remit after their onset, i.e., they remit again. The frequency of occurrence of new symptoms, so-called relapses, is also very individual and can range from several per year to one or none every ten years.

Figure 1: Relapsing-remitting MS. Left: with complete regression of relapses; Right: without complete regression after relapses.

If the disease activity increases throughout the disease or if the damage does not regress sufficiently, the condition is described as secondary progressive (SPMS).

Secondary because the MS initially, i.e. primarily, took a regressive condition.

Figure 2: Secondary progressive MS. Left: Progressive deterioration after relapsing-remitting condition; Right: Progressive deterioration (with superimposed relapses) after relapsing-remitting condition.

Finally, in rarer cases (15%) there is a primary progressive condition (PPMS). This means that directly from the onset of the disease, the damage no longer recedes or recedes only insufficiently. There are therefore no phases of recovery, but a continuous, i.e. progressive, increase in symptoms.

Figure 3: Primary progressive MS. Left: Progressive deterioration since disease onset; Right: Progressive deterioration since disease onset (with phases of mild improvement or no progression, as appropriate).

Prognostication10

Generally speaking, the individual condition cannot be predicted. On average, in the existing cases, after about 15 years, 50% of the patients see the need for a walking aid. After 25 years 1/3 are no longer able to walk, and 2/3 of the patients are no longer able to work. No or only a slight disability is seen in about 10%. Overall, life expectancy is reduced by about 6-7 years in people with MS.

As medication improves, this picture may change for both existing and future patients.

There are prognostically more favorable and unfavorable factors from observation of existing conditions.

Favorable factors are shown to be:

▪ Onset < 35 years of age

▪ Isolated symptoms, only sensory symptoms

▪ Short duration (only a few days) of relapses and complete regression

▪ Preserved ability to walk

▪ Visible only late

Rather unfavorable factors are:

▪ A late disease

▪ Early multiple symptoms at the same time, the inclusion of motor and cerebellar symptoms

▪ Long duration of relapses with incomplete regression

▪ Early loss of walking ability

▪ Initial high lesion burden

Diagnosis11

MS is a diagnosis that can often only be given after several years.

Utilizing anamnesis the suspicion of an inflammatory-demyelinating disease of the central nervous system can be raised in case of neurological deficits. To specify this, some differential diagnoses must be excluded. For this, imaging by MRI as well as laboratory diagnostics (blood, urine, CSF) is necessary.

Taking into account and excluding differential diagnoses (such as borreliosis, HIV infection, vitamin B12 deficiency, systematic lupus erythematosus), MS is diagnosed using the McDonald criteria:

Pushes

Objectifiable clinical manifestations

Other required criteria

2 or more

2 or more

none; clinical "evidence" sufficient (additional "evidence" desirable, must then be compatible with MS)

2 or more

1

spatial dissemination on MRI (see below for definition) or further clinical relapse (or positive CSF findings and 2 or more MS-typical lesions on MRI). Old McDonald criteria

Pushes

Objectifiable clinical manifestations

Other required criteria

1

 2 or more

temporal dissemination on MRI (see below for definition) or second clinical episode or oligoclonal bands in CSF (without corresponding detection in serum)

1

 1

Spatial dissemination in MRI (see below) and temporal dissemination in MRI (see below) or detection of specific oligoclonal bands in the CSF or second clinical episode

Table 1: McDonald’s criteria for the diagnosis of relapsing-remitting MS.

Neurologic progression suggestive of MS

 One year of disease progression (retrospectively or prospectively determined); and Two of three of the following criteria: - Evidence of spatial dissemination in the brain based on ≥1 T2 lesions in regions typical of MS (infratentorial, (juxta-) cortical, periventricular). -Detection of spatial dissemination of the spinal cord (≥2 T2 lesions). -Detection of oligoclonal IgG bands in the cerebrospinal fluid.

Table 2: McDonald criteria for the diagnosis of primary progressive MS.

2. Take health into your own hands – 9 building blocks for a good condition

If you are newly diagnosed with multiple sclerosis in Germany today, you often have a long ordeal behind you. In many cases, it takes years until the real cause of the unspecific symptoms is recognized. A wide variety of doctors have performed different examinations. From blood tests to MRI, many things were done to get certainty.

If MS has now been diagnosed, it is decided whether and which basic therapy will be used. If there are worsening or strong side effects over time, one thinks about the use of another basic therapy. Existing symptoms are treated as far as possible. In acute relapses, cortisone therapy is often used. If the MS is calm, one visits the treating neurologist at regular intervals and gets an MRI for progress control. What one rarely hears during this time, however, is information about a healthy lifestyle or the question of whether one smokes, exercises regularly, or eats a healthy diet.

Based on current knowledge, we know that lifestyle has an impact on overall physical health. We know that a healthy lifestyle can prevent or even cure diseases. Likewise, we know that harmful lifestyle choices are detrimental to our health. Yet the connection to MS is usually misunderstood.

The following chapters address this very point. First, we discuss how lifestyle affects physical health in general. Then, the concept of lifestyle medicine is explained and applied to MS. To this end, 9 sub-areas are examined in detail so that in the future every MS sufferer will be well informed about what he/she can do for himself/herself. My wish would be to not only discuss medications at the doctor's office but also to learn that exercise can be very helpful or how meditation can improve anxiety. In the best case, I would get a sports program on prescription and support in implementing a healthy diet. However, this is probably still a thing of the future.

Therefore, at this point, I deal with the existing research myself and draw conclusions from scientific studies.

What are scientific studies? What types are there and how do they differ?

Scientific studies provide serious information based on the analysis of collected data. In the beginning, there are hypotheses or questions. For example, one might ask whether smokers have MS more often than nonsmokers. To answer this question, data are now collected. This can happen, for example, through a questionnaire, but also through the analysis of patient data. In addition, there are countless other possibilities, each of which is selected according to the question asked.

Absolutely fundamental for serious research are three quality criteria. These are reliability, validity, and objectivity.

Reliability is the formal accuracy of scientific investigations. Maximum effort should be made to exclude measurement errors of any kind. Validity is when the chosen indicators, questions, and response options truly and accurately measure what is intended to be measured. The objectivity of measurement methods and questions can be guaranteed if the choice of measurers, interviewers, and examiners does not influence the results.

Not all studies are equal. They also differ in terms of their evidence (certainty or certainty of validity). In terms of evidence, science distinguishes between metastudies, randomized controlled and blinded (clinical) studies, and cohort studies. All these studies exist in different subgroups and types, and some of them have different names, but in general, they are graded according to the strength of evidence and relevance.

Metastudies are studies that combine the results from multiple studies. Thus, they have the highest significance and are the most "credible".

The second tier directly below are studies in which participants are randomly assigned to either the experimental group or the control group. Neither the participant nor the controller, e.g. the physician, knows which study group the person belongs to. This is why these studies are called "blinded." Since none of the participants knows whether they are injecting a drug or a placebo, for example, it is possible in this way to investigate precisely whether the intervention, in this case, the drug, works.

Cohort studies (e.g., in "epidemiology") are considered the third level of evidence below. Here, groups of people are observed in their behavior or questioned about their behavior.

When evaluating and assessing studies, all these criteria are taken into account. In addition, one looks at whether there are inconsistencies and whether the statistics were interpreted correctly.

Life style medicine as an approach to healing the system?

My personal MS history is now more than 13 years long. After various relapses and with more than 40 lesions in my head, I have been living relapse-free and largely symptom-free for several years now.

Unfortunately, I was not always as well off as I am today. Exactly these low points and the bad outlooks, which looked at me from everywhere, inspired me to look for whether and how I could possibly help myself.

My approach was always based on scientific facts and never just on experience. And that's how I eventually ended up with an evidence-based practice called "Life Style Medicine."

But first to the basic question: What is LifestyleMedicine anyway?

This direction of medicine has its origin in the USA. In the last few years it has become more and more important, but even today it is still rather a small practice.

The basic logic of Life Style Medicine is based on the observation that, on the one hand, we are getting older, but on the other hand, the quality of life decreases, especially in old age. In the USA, life expectancy in 2000 was 77.9 years. This is significantly longer than the 50 or so years it was 100 years ago. On the other hand, people today no longer fit into old age. On average, people live about the last 12 years with limitations due to various diseases.

Just 100 years ago, infectious diseases were the most common cause of death. Today, it is by far cardiovascular diseases or cancer. It is precisely these diseases that are contributed to by lifestyle choices such as smoking, poor diet, too little exercise, or alcohol consumption.

The achievements of the new medicine make it possible to survive infectious diseases. They also help people to live to a ripe old age despite various common diseases or non-communicable diseases (NCDs). Thanks to medications such as insulin or blood pressure medication, we are growing old today, but in very many cases we do not remain healthy.

Typical common diseases include diabetes, hypertension, and obesity. They are not infectiously transmissible but are mainly caused by our lifestyle.

It should be the wish of all of us to lead a healthy, fulfilled, and self-determined long life. Nobody wants to be determined by illness and medication.

This is where Life Style Medicine is located. By striving for a healthy lifestyle, one tries to prevent common diseases and, in the worst case, heal them.

If one makes better lifestyle choices, one can restore balance in the body. The results are often amazing!

These measures include:

▪ Sports and exercise

▪ Healthy diet

▪ Sufficient and good sleep

▪ Stress reduction

▪ Meditation, relaxation

▪ Social life

▪ Avoidance of alcohol and drug abuse

▪ Mental occupation

As trivial as it may sound at first, it can be very effective in individual cases.

There are impressive study results that show that lifestyle measures can be extremely successful both as a preventive measure and for the treatment of some diseases.

If you look at diseases in the cardiovascular system, for example, you'll find evidence that lifestyle measures can not only prevent atherosclerosis (i.e., blockages in blood vessels) but also clear them. This is not only before a heart attack but even after! Strokes can also be prevented, even after one has already happened. Likewise, some studies show that type II diabetes can go into remission. Finally, you can find studies that show that some types of cancer, such as colon cancer, can be prevented.12

In short, a healthy lifestyle is not only the prevention of various diseases but also the best medicine. For example, medications to lower cholesterol are often not as effective as dietary changes.

Life Style Medicine for MS?

Life Style Medicine deals predominantly with "common diseases". This has, on the one hand, the reason that these lead to the most frequent illnesses and also deaths, on the other hand, however, are influenced by lifestyle.

Life Style Medicine does not deal with neurological diseases like MS so far. On the other hand, classical orthodox medicine, especially neurology, does not deal with questions of lifestyle or only in certain cases.

At this point, however, I would like to unite the two concepts. It seems more than logical and obvious to me from various considerations that lifestyle could also influence people with MS.

In the following chapters I try to apply the sub-areas of Life Style Medicine to MS. I question whether nutrition, sport, or similar can have an influence on MS and what this looks like. For this purpose, countless studies are analyzed and examined for their content and their significance.

In addition to the classic sub-areas of lifestyle medicine, measures and topics that are particularly relevant for MS are discussed in the following. These are, for example, vitamin D and sun exposure.

Wherever possible, recommendations are then derived that can help lead a healthy life with MS, just as I do.

The origin of this book

As part of my doctorate in economics, I learned scientific work in detail. In addition to writing my research papers, this also included analyzing and evaluating scientific studies. The knowledge of statistics and research methods is a necessary tool. Over the years, I have worked as a reviewer for scientific journals and conferences myself.

It is this very analysis and understanding of studies that helped me immensely in writing this book. Even if economics is not the same as medicine, they are the same or similar scientific methods.

However, to further immerse me in the subject matter, I took courses at medical schools. These included "Nutritional Science" at Stanford, "The Brain" (neuroanatomy), and "Brain Health" at Harvard.

With all of this equipment, I was able to read and evaluate hundreds, if not thousands, of studies. This book finally emerged from these several years of part-time work.

2.1 Sun exposure and vitamin D

Whenever the question arises as to what is the cause of the development of MS, one also hears about vitamin D or solar radiation. Can it be since one was too little in the sun? Is perhaps the too little vitamin D in the body the cause or does it even influence the course?

When I received my diagnosis more than 13 years ago, I never heard anything concrete about it from any doctor. It is therefore all the more exciting to observe how the evidence and studies on this subject are becoming denser.

There are almost only relevant studies that have been done in the last ten years or so. Above all, however, the connection is becoming increasingly clear and concrete.

So it remains exciting to see what else will happen here in the future, possibly even in the near future.

Does sun exposure or vitamin D level affect the development of MS?

The development of MS can be attributed to very many factors and times. One hypothesis is indeed the sun exposure of the mother during pregnancy. The amount of sun exposure during childhood and adolescence would also be conceivable risk factors. Finally, where one grows up and how strong the sun exposure is there could also make a difference. Likewise, differences in people of other ethnicities are conceivable.

And these are precisely the points researchers are addressing in their search. First, a 2010 study asked whether maternal UV exposure during pregnancy, as well as the month of birth of the children, has an impact on the development of MS. Indeed, the Australian study, using data from birth registries, can show that infants with the highest UV exposure in the first trimester had the lowest risk of MS.13

A 2012 systematic review supports the thesis but has a slightly different result. The researchers found an increased risk for birth months in April through May and a reduced MS risk for births in October or November. Again, the researchers suspect maternal sun exposure as a determining factor. However, it appears to be not only exposure in the first trimester but also in the second trimester. Accordingly, they, therefore, support the thesis that vitamin D should be supplemented during pregnancy.14

Going further and looking at sun exposure in childhood, a 2014 study provides interesting insights. Researchers analyzed the sun habits of children and adolescents in Italy and Norway. Adolescents from Norway who were outside only irregularly between the ages of 16 and 18 had a significantly increased risk of MS. In the Italian children, however, this was evident only at ages 0-5. In addition, regular use of sunscreen in young children (0-6 years) in Norway increased the risk. In addition, blond or red hair showed a higher risk of MS.15

In addition, another study found that MS onset was 2.1 years earlier on average in people who lived in areas that had low to moderate sun exposure when they were 6-15 years old. However, taking cod liver oil during this period delayed the onset of the disease by about four years.16

Another study examined whether it made a difference which ethnicity one belonged to. In general, the researchers found a correlation between higher sun exposure throughout life and reduced MS risk. However, this was true only in light-skinned and dark-skinned people, but not in Hispanics. It is also interesting to note that higher blood levels of vitamin D are associated with a lower risk of MS only in white people.17

Seeing these initial study results, it is reasonable to assume that taking vitamin D, as a "substitute" for sufficient sun exposure, so to speak, in childhood and also possibly as an adult and at best during pregnancy could have a preventive effect.

And, in fact, research is finding more evidence of just that.

For one thing, a very extensive study by Harvard University, which tracked the health of tens of thousands of nurses over many years, shows that vitamin D levels can be linked to the development of cancer, as well as bone fractures, MS, cardiovascular disease, and hypertension. Of particular interest to us here is the result concerning the prevention of MS. Already the intake of 400iE vitamin D per day was able to reduce the risk of developing MS by 65% in this cohort!18

Second, in a study in Norway, researchers found that supplementation of 600-800iE per day in the form of cod liver oil had the greatest effect on reducing the risk of MS in adolescents aged 13-18 years.19

A Lancet Review from 2010 also emphasizes exactly this. Vitamin D may very well have a preventive function. They see this as most important in the adolescent years, but also possibly in pregnancy and childhood.20 Even in adulthood, low vitamin D is still associated with higher MS risk.21

Researchers took up another very interesting aspect in 2014 by asking whether low vitamin D levels could be an indicator for the transition of a clinically isolated syndrome (CIS) into diagnosed MS.

And this is exactly what they were able to confirm. If low vitamin D levels were measured at baseline, the risk of developing confirmed MS as well as its progression was increased. The editor of the journal sees exactly this result as the reason for a personal statement in the preface of the issue. He appeals to the fact that the need for clinical studies to further clarify this connection is enormously high. On the other hand, he writes that in the event of a first neurological failure (CIS), he would not hesitate a second in himself or his family to take 10,000iE of vitamin D a day as a preventive measure. At the same time, of course, he can understand that in the absence of phase 3 clinical trials, no physician would prescribe such high doses to his patients.22

Can blood vitamin D levels and/or sun exposure have an impact on progression?

The influence of vitamin D and sun exposure on the development of MS has already been described. Now, however, for those of us who are already ill, the question arises whether the continued intake of vitamin D can also positively influence progression.

And indeed, with the exception of one review, which is still somewhat cautiously positive in its statement23, all other identified studies agree that higher vitamin D levels are associated with lower disease activity.24

A 2010 study of 145 patients with RRMS showed an inverse linear relationship between relapse rate and vitamin D level. There is a dose-response relationship. Thus, the higher the vitamin D levels, the lower the relapse rate. In numbers, this means a halving of the relapse rate at 50nmol/l higher levels!25

Two years later, in 2012, researchers studied 156 people with RRMS. They received concurrent therapy and about 3000iE of vitamin D per day. The results are very similar to those of the previous study. They, too, show a significant reduction in relapse rate with higher vitamin D levels. However, this study also finds a "plateau". There were no further effects at levels above 110nmol/l26.

Furthermore, in 2014, researchers confirmed the findings with a larger study group of 465 people. More generally, higher vitamin D levels were associated with lower MS activity. In numbers, they even found slightly higher levels than in previous studies. If the level of vitamin D was above 50nmol/l in the blood during the first year, the relapse rate was reduced by 57% as well as the increase in lesions was 25% lower.27

Even though these results already show very positive results, it will be exciting again in the coming years. A group of researchers is currently actively working on a systematic review, which will summarize everything that has been done so far.28

The potential of vitamin D is impressive. A halving of the relapse rate is not only impressive but also of crucial importance for sufferers concerning the long-term course! Many of the existing drugs cannot achieve such positive effects.

What is the correct dose?

The potential of sun exposure and/or vitamin D supplementation appears to have effects on both the prevention of MS and its progression.

The logical question that follows is what is the optimal dosage of vitamin D? There are some interesting findings on this as well.

According to the Lancet, in 2010 the current recommendation was 200-400iE per day in Europe, and 200-600iE in Canada and the US. The optimal serum level should be 50-100nmol/l, he said. The authors of some studies think that taking 1000-4000iE per day is most likely not toxic and even 10,000iE per day for adults is not a risk.29

The Harvard study with tens of thousands of nurses mentioned above draws a very similar conclusion but goes one step further. Given the numerous preventive effects of vitamin D, the entire population should be supplemented with vitamin D at best. Here, blood levels should reach at least 30ng/ml. A daily dose of 1000- 2000 iE is considered safe and effective, but it can be assumed that the safe level is above 1000 iE per day.30

The recommended dose can therefore be around 3000-5000IE per day. For this purpose, the blood values should be checked regularly. The blood level of vitamin D should reach above 100nmol/L, as this is where the greatest reduction in relapses was observed.31 Finally, studies report that individuals who supplement vitamin D or have targeted sun exposure have a higher quality of life.32

2.2 Sleep

Our body needs several hours of sleep a day to recover and regenerate. The necessary sleep duration varies depending on age (see Table 3).

Age

Recommended sleep duration per day

0-3 months

14-17h (incl. daytime sleep)

4-12 months

12-16h (incl. daytime sleep)

1-2 years

11-14h(incl. daytime sleep)

3-5 years

10-13h(incl. daytime sleep)

6-12 years

9-12h

13-18 years

8-10h

18-60 years

More than 7h

61-65 years

7-9h

More than 65 years

7-8h

Table 3: Need for sleep by age33

Sleep is just as essential for our body as oxygen for breathing or the supply of food. If there is a lack of adequate sleep duration or if the quality of sleep is disturbed, this may have negative effects on all body systems. For example, lack of sleep can contribute to high blood pressure or cardiovascular disease in some individuals. This in turn increases the risk of strokes or heart attacks.34 Effects on the immune system are also to be expected. For example, sleep deprivation reduces the effectiveness of flu vaccinations and can increase the duration of infections.35

If the body does not get enough sleep, this can also have far-reaching effects on the central nervous system. This ranges from concentration difficulties and bad moods to memory problems and reduced reaction speed. In the worst case, this can be fatal, for example in road traffic.36

Sleep disorders in people with MS

In the daily environment alone, it is obvious that sleep disorders are a very common phenomenon. All too often, one hears about insomnia at night, problems falling asleep or bad dreams.

Unfortunately, these and other sleep disorders are even more common in people with MS than in the average population. Depending on the study, figures between 47.5% and 70% of people with MS suffer from sleep problems.37

These are insomnia, sleep apnea, muscle movements such as restless legs, and day-night rhythm disorders. In addition, some MS medications also cause side effects that can interfere with sleep. Interferons are one such example. It is not uncommon to experience flu symptoms such as chills at night after an evening injection. Restful sleep is so often not possible.38

Unfortunately, there is evidence that sleep disturbances are even more harmful in people with MS than in otherwise healthy people. In a sleep lab study and using other testing procedures, a team of researchers showed that people with MS who also suffered from sleep disorders had significantly reduced cognitive performance. These people had severe impairments in visual memory, verbal skills, attention and processing speed, and also working memory.39