MS and healthy: Scientifically proven recommendations for an active life with multiple sclerosis

By Claudia Brunner

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.

• Language: English
• Publisher: tredition
• Release date: Jan 2, 2023
• ISBN: 9783347729056

Claudia Brunner

Claudia Brunner a étudié ´business economics´ et la philosophie avant d'occuper un poste dans un cabinet de conseil en gestion bien connu après avoir obtenu son diplôme. Le doctorat qui a suivi dans le domaine de l'économie d'entreprise a donné lieu à de nombreuses publications scientifiques. Plusieurs années de recherche ont suivi. Diverses formations complémentaires, dont une sur les sciences nutritionnelles (« Nutrition Science ») à la Stanford School of Medicine, ainsi qu’une sur « Evidence-Based Optimal Nutrition » à la Harvard School of Public Health ainsi que « The Brain » et « Brain Health » à la Elle est également diplômée de la Harvard Extension School afin de préparer au mieux son projet de livre. Aujourd'hui, Claudia Brunner travaille comme professeur et est mère de 3 filles. Elle a reçu son diagnostic de SEP en 2009.

Book preview

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 forms ⁹

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).

Prognostication ¹⁰

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