Multiple sclerosisThe diagnosis of "multiple sclerosis" (MS) still sounds like a death sentence to some people, with many at least inevitably thinking of a life in a wheelchair. Both are not correct. According to the University Medical Center Hamburg-Eppendorf (UKE), the nerve disease can reduce the life expectancy of those affected by an average of five to ten years. On the other hand, MS is now very good. Very versatile treatable.
MS: 1000 faces, many therapeutic approaches
It is true that in the course of the disease, most patients have to reckon at least temporarily with unpleasant and also severe concomitant symptoms, such as severe exhaustion or limited mobility. Constant, for example daily discomfort or a complete disability can often be avoided, if therapy is carried out according to the current medical state of the art. According to the UKE, half of the patients are still able to walk after fifteen years. Thus not at all or only temporarily dependent on a wheelchair. Nevertheless, multiple sclerosis is still an incurable chronic disease, which, according to a recent study by the Federal Insurance Office (BVA), affects about 200 people in Germany.000 people are affected. MS usually breaks out at a young age, between 20 and 40 years of age, and can severely impair the quality of life, at least in certain phases. A characteristic of the disease can be the typical relapses, which last for days and can then subside again for a longer period of time. However, MS occurs in different forms. Accordingly, the course of the disease is often completely different from patient to patient. And so there are also forms of progression completely without relapses.
The fact that multiple sclerosis can be kept in check in many cases today is due not least to advances in drug therapy. A major breakthrough was the so-called beta interferons, which slow down the course of the disease by suppressing inflammatory processes. Later, special immunomodulating drugs became available that influence the immune system so that it no longer turns against its own body and destroys nerve cells. In principle, therapy is increasingly no longer just about reducing relapse rates, but about slowing down the course of the disease and thus the patient's progressive disability. And progress is also being made in treating the symptoms of the disease.
However, progress in therapy has not only been achieved by finding new active substances. The use of medications has also become more patient-friendly, for example because drugs no longer have to be injected, but can be taken in tablet form. Altogether medicaments play for the condition. The performance of the patient plays a role that should not be underestimated. In an international survey, 40 percent of MS patients said that their medication and symptomatic treatment were the reason why they could continue to work despite their disease. By comparison, only about eleven percent of them gave rehabilitation as a reason, although this is undoubtedly also an important component of MS therapy.
We would like to give you a brief overview of the multifaceted clinical picture of MS and show you the different treatment options that are available. As experts we have Prof. Dr. Lutz Harms, senior physician in the Department of Neurology at the Charite in Berlin, interviewed. The neurologist talks about progress in therapy. Possible breakthroughs in future research.
As always, you are welcome to use the text and image material of the press service for editorial purposes free of charge, provided that you cite the sources.
MS – what is it actually??
One patient suffers from a sudden loss of vision, another complains of paralysis in the arm, and a third suffers from speech or memory disorders. Multiple sclerosis is not called the disease of "1000 faces" without reason. And the very fact that there are so many different symptoms from case to case that may or may not indicate MS makes diagnosis a difficult matter that should be reserved for the specialist.
How can multiple sclerosis be recognized at all?? And what is actually hidden behind the disease term? Generally speaking, MS is an inflammation of the nerves in the brain and spinal cord, i.e. in central switching points of the human body. To be more precise, the nerve sheaths, the so-called myelins, are destroyed to such an extent by an autoimmune inflammatory reaction triggered by the body itself that the transmission of nerve impulses from or to the brain is disturbed. This can severely impair bodily functions such as walking, vision, or grasping. The destroyed nerve sheaths are called "plaques", just like the protein deposits in the brain in Alzheimer's disease. They are hardened, or "sclerosed" in the technical jargon, hence the second word in the name of the disease. As "multiple MS is called sclerosis because the hardened destruction of the nerve sheaths occurs in many different parts of the brain and spinal cord. As with many other autoimmune diseases, for example rheumatism, scientists are still in the dark as to the exact causes. Suspected disease triggers include viral infections such as measles, rubella or the Epstein-Barr virus, environmental factors or even vitamin D deficiency. In addition also certain genetic and hormonal conditions seem to play a role. Analogous to other autoimmune diseases, it must be amed that the interaction of a multitude of factors is responsible for the development of multiple sclerosis. It is certain that more female patients than male patients are affected by the disease.
According to the DMSG, women are affected twice as often as men. It is also known that people living in temperate climates are more likely to develop MS than people living closer to the equator.
How does multiple sclerosis manifest itself??
MS patients often report a wide variety of symptoms, which can also change over the course of the disease. Among the frequently described initial symptoms, medical experts report that Dr. Gunter Kramer and Prof. Dr. According to Roland Besser, the symptoms include sensory disturbances in the arms or legs, severe fatigue, bowel emptying disorders, unsteadiness when walking and standing, and visual disturbances. Paralysis and speech disorders are also repeatedly described. According to Kramer/Besser, however, the most frequent symptoms by far in relation to the entire course of the disease are gait disturbances due to spasticity and weakness in the legs. Both complaints are reported by 90 percent of MS sufferers.
The multitude of possible initial symptoms and the individual manifestations do not make it easy for the physician to diagnose multiple sclerosis in the patient without any doubt. After all, it can always be a completely different disease. It is therefore all the more important that patients with suspected MS consult a neurological specialist who, based on his experience, knows which examinations are necessary. According to the University Hospital of Gottingen, the neurologist "usually wants to have seen at least two separate episodes, with symptoms separated by at least a month and persisting for at least 24 hours, before suspecting MS."The doctor will also inquire about possible pre-existing diseases and genetic predispositions, and what medications the patient may already be taking.
In addition, he will check certain motor functions that may be disturbed by MS, for example the mobility of extremities or the sense of balance. Then usually blood tests are carried out, however with the goal to exclude other diseases. So far, the disease cannot be detected in the blood. In order to further specify the diagnosis, nerve fluid is taken from the spinal cord with a hollow needle. If certain protein cells can be detected in a cluster, the suspicion of multiple sclerosis becomes stronger. The picture becomes even more precise when the brain is examined by magnetic resonance imaging and inflammation sites are already found.
Different forms of progression
Although MS varies greatly from patient to patient, it can take three general forms: relapsing-remitting (RRMS), secondary progressive (SPMS) or primary progressive (PPMS).
RRMS: Patients suffering from the relapsing-remitting form of the disease experience permanent alternations between sudden, recurrent episodes of the disease and complete or partial remission of the disease. The MS can be completely inactive over a long period of time.
SPMS: In patients affected by the secondary progressive form, the disease and degree of disability are constantly progressing. In addition, relapses occur repeatedly, after which there is no regression of the disease, unlike RRMS. Often, RRMS transitions to SPMS after about 10-15 years. According to international MS experts, this statistically applies to about one in two patients with multiple sclerosis.
PPMS: In the primary progressive form, symptoms start very slowly and sometimes even come to a brief halt. Overall, however, the disease is getting progressively worse and disability is increasing. In contrast to PPMS, there are no relapses.
Therapies against MS
According to calculations by the German Federal Insurance Office (BVA), there are about 200.000 people suffering from multiple sclerosis. Every single one of them is temporarily or even permanently dependent on medical help. However, according to experts, in many cases this is done inadequately.
If you believe Dr. Olaf Hoffmann, the medical director of the St.-If we look at the number of patients treated at St. Joseph's Hospital in Potsdam-Sanssouci, not even half of all MS patients receive treatment in accordance with guidelines, i.e., as recommended by the medical associations. However, this is not only due to the fact that the disease is sometimes overlooked. An important reason, as arzte Zeitung quotes the expert, "is that even under the current conditions of outpatient specialist care, the treatment of MS patients is underfinanced." Are savings being made at the wrong end, as so many experts complain?? In fact, the costs that can be caused by multiple sclerosis are not insignificant. In an analysis by the Philipps University in Marburg, the average annual total cost per patient is around 39,000.000 Euro the speech. More than half of these, he said, are direct costs, such as therapies and hospitalizations, with the remaining portion due to lost work or. Early retirement indirectly caused. On the other hand, it should not be forgotten that spending on therapies, for example, that have positive effects on the quality of life of those affected can also prevent costs from being incurred. For example, because MS sufferers can continue to work and do not have to take early retirement immediately. The International Survey on employment and MS of the Multiple Sclerosis International Federation (MSIF) has shown interesting results in this context. The researchers had received 8.000 MS patients were surveyed, including the reasons why they were able to continue working despite the disease. The "medication/treatment of symptoms" reason Came after "stable disease progression" in the process in second place, with more than 40 percent of the respondents citing it. The reason "disease-modifying treatment" was named fourth most frequently, with about 38 percent citing it.
In the case of multiple sclerosis, there are various therapeutic approaches, which are pursued at different times or simultaneously, depending on the individual situation of the disease. On the one hand, the aim is to treat acute attacks, and on the other hand, to slow down the progression of the disease in the long term. Another important approach is the therapy of accompanying symptoms such as fatigue, sexual dysfunction or spasticity. Symptom therapy, in particular, plays an important role for the quality of life and not least for the ability to work of those affected, as also shown by the international MS study mentioned earlier. Of course, all drugs used to treat MS have side effects, but these are usually outweighed by the positive effects. In addition, alternative preparations are available in many cases of intolerance.
Fight the relapses – The acute therapy: The inflammation of the nerve sheaths triggered by the autoimmune reaction initiates an acute disease flare-up. In order to reduce inflammation and shorten the course of the disease, patients are given high doses of prednisolone containing cortisone at short intervals. According to the University Hospital of Gottingen, cortisone therapy is particularly effective in the first five years of treatment, but cannot stop the progression of the disease in the long term. Long-term therapy with low doses, on the other hand, has not proven effective because of the low effect and major side effects, according to the clinic's website. If treatment with cortisone steroids is unsuccessful, blood washing, known as immunoadsorption, can also help, removing antibodies from the blood.
Positively influencing the course of the disease – disease-modifying therapy: In order to positively influence the course of multiple sclerosis, continuous therapy is usually required that directly intervenes in the disease processes. There are two special types of drugs for this purpose: immunosuppressants and immunomodulators. Immunosuppressants, as the name suggests, suppress the excessive reaction of the immune system. The immunomodulators actively intervene in the complicated inflammatory process by modifying the inflammatory process. Ultimately, the goal is to positively influence the progression of MS. The disease is still not curable, but relapses can be prevented and the progression of the disability slowed down. Exactly which drug is used for this purpose always depends on the individual disease situation as well as the needs and preferences of the patient. In the past, one always started with the so-called basic therapy and, if no corresponding effect was achieved, switched to escalation therapy. In 2014, however, the Multiple Sclerosis Competence Network updated the treatment guideline and discarded the fixed step regimen. According to the latest state of the art, treatment is now based solely on the course of the disease.
That is: If the MS disease is mild or moderate, patients are given interferons or glatiramer acetate, which they inject themselves. Recently, there are with teriflunomide. Dimethyl fumarate also alternatives in tablet or oral form. Capsule form.
When the MS disease is "highly active." patients are treated directly with monoclonal antibodies such as alemtuzumab or natalizumab in the form of an infusion or a saline solution. Fingolimod in tablet form. These highly specific, biotechnologically produced active ingredients can act in a very targeted manner at various sites and have a lasting positive effect on the disease process. For example, the immune cells can be prevented from crossing the blood-brain barrier.
Alleviating symptoms – Symptom therapy
It is often individual accompanying symptoms such as severe fatigue, spasticity, bladder emptying disorders or depression that are the greatest burden on MS patients in everyday life. There are treatment options for many of these symptoms. For example, spasticity can be treated by physiotherapy on the one hand and by special medication on the other hand. Effective preparations are also available for all other problems mentioned and pain in general. In addition, physiotherapy also plays an important role, because moderate physical activity and special mobility and exercise programs are important. Coordination exercises can positively influence the state of health as well as the psyche of the MS patient.
Interview: "The last few years in particular have been exciting"
Prof. Dr. Lutz Harms is a senior physician at the Neurological Clinic of the Charite Hospital in Berlin. Since 2007, he has headed a research group for clinical neuroimmunology at Berlin's Charite University Hospital and, together with his colleagues, has been conducting research to improve diagnostic and therapeutic options for neuroimmunological diseases, particularly multiple sclerosis.
How does multiple sclerosis actually develop and why are mainly younger people affected??
Prof. Harms: There are many theories why MS develops but also a lot of uncertainties. We know a number of causes but the problem is that it is a multifactorial disease. In addition to genetic factors, there are also certain environmental factors. What we know for sure is that in MS the immune system gets out of control and peripheral activated lymphocytes, i.e. white blood cells of the immune defense, penetrate the blood-brain barrier. Why this is so is not yet completely clear, probably they camouflage themselves in a certain way. And then the inflammatory process gets going in the brain, which leads to the dreaded symptoms of MS. In the first inflammatory wave, myelin, the nerve sheath, is destroyed. In addition, there is a secondary neurodegenerative phase, which obviously starts earlier than we thought so far. Local immune cells such as microglia and astrocytes are responsible for this.
Why young people in particular are affected is a matter of speculation. The maturation of the immune system presumably plays a role. In MS we ame that certain confrontations with foreign antigens lead to an activation of the immune system. Then this immune system is directed against the own body substances and possibly a more active immune system is necessary for this, as we find it in maturing adolescents and young people. This is also the case with other autoimmune diseases, for example with certain rheumatological diseases. By the way, on average, more than twice as many women as men are affected by MS, so hormonal factors will probably play a role as well.
The symptoms of MS are very different from person to person, especially in the beginning. How then can the disease actually be diagnosed beyond doubt?
Prof. Harms: First by looking closely at the symptoms. The individual symptoms depend on where the initial inflammatory process takes place. There are preferential localizations, for example on the optic nerve. Very often, these patients complain at the beginning about a loss of vision, which then usually regresses, or at least significant visual disturbances, usually in one eye. Sensory disturbances, paralysis or coordination disorders can also occur. These are first of all very unspecific symptoms, which then lead the patient to the doctor. But today we have clear criteria that define MS and how we can clearly diagnose it. Here the magnetic resonance imaging is the center of attention. The principle is always the same, we have to prove that we have a dissemination in space and time, d.h. a disease that occurs in several focal inflammatory activities. This can be determined by imaging if certain defined brain regions are affected, foci of different ages are present or certain changes in the nervous fluid are present and we can rule out the possibility of another disease causing a similar pattern. The diagnosis also includes a lumbar puncture and often certain electrophysiological examinations.
The MS diagnosis is a shock for many affected persons, not a few immediately think of a life in a wheelchair. Is this path really mapped out?
Prof. Harms: Thank God, this is no longer the case today. Nevertheless, we still can't cure MS. There is statistical data on how long it takes to reach an inability to walk, on average it is between 20 and 30 years. But that's very generally speaking, because many patients are not affected by this at all. Moreover, these are data from the past and do not yet fully take into account modern therapy measures. It is clear, however, that the disability generally cannot be stopped completely and that the life of MS patients statistically can be shortened by a few years. In individual cases, however, things may always look different, which is why it is difficult to predict the course of the disease.
There are many patients who are able to remain fully employed despite their MS diagnosis. Some, for example the Minister President of Rhineland-Palatinate Malu Dreyer, can even hold leadership positions. Are these rare exceptions?
Prof. Harms: .There are a lot of people with MS who can stay in work for a very long time and hold demanding positions, for example because the therapy works so well or the patients are lucky enough to have a mild form of the disease. With the term "benign, i.e. benign forms of progression, but I would be very cautious. Statistically, certainly half of the patients are unable to work after ten or twelve years. But then it is not necessarily about walking and movement disorders, but very often about the dreaded fatigue syndrome, which often leads to incapacity to work.
How can MS actually be treated??
Prof. Harms: Basically, there are three pillars of therapy. First of all the acute relapse therapy. Standard treatment is with a high dose of cortisone, usually methylprednisolone. If this is not sufficient, blood washing, so-called plasmapheresis (PE) or immunoadsorption (IA), can be performed. This shortens the relapse and prevents the extent of this initial inflammation. Since the intensity and frequency of the relapses have an influence on the long-term course of the disease, especially in the early phase, it is advisable to start a relapse prophylactic therapy after the diagnosis has been made.
That means doing immunomodulation or immunosuppression to prevent the relapses in the hope that it will stop or at least slow down the disability progression. And if we have patients who don't respond, we will change the drug and switch to a drug with a different mechanism of action or higher efficacy. The third pillar would be symptomatic therapy, which must not be neglected. Of course, it's about improving the quality of life, whether it's by affecting spasticity, sexual dysfunction, or bladder and rectal dysfunction, whether it's treating depression, or so-called fatigue. This is very important for the patients' well-being.
What is currently happening in drug research? Is there any progress with regard to MS in the last time??
Prof. Harms: Yes, especially the last years were very exciting because of several new findings and the approval of new, very effective drugs, all with the goal to reduce the frequency of relapses. Today, we have an extensive portfolio of drugs with very different modes of action, which also differ in terms of the mode of application and the side effect profile. .
Last year, the first drug was also approved for the primary progressive form of MS, which until then we could only treat symptomatically. Now we are waiting for the approval of a drug for the secondary progressive form of MS.
Studies with drugs that cause regeneration of the nerve sheaths have so far shown only marginal effects. But intensive research is also being done in this area. The myelin destroyed by the inflammatory processes can only recover to a limited extent. There seems to be an endogenous inhibition here and there is hope that monoclonal antibodies can be used to reverse this inhibition so that the myelin-forming oligodendocytes are able to repair again. In animal experiments this approach was already successful.
Is there also progress in optimizing therapy or in proven active substances?
Prof. Harms: Yes, for many years we had only the injection therapy, the patients had to inject themselves in different frequencies. Then came the oral therapies or new monoclonal antibodies, very effective therapies indeed, but sometimes with a risk of serious side effects. For the dreaded progressive multilocular leukoencephalopathy (PML) with natalizumab treatment, which is caused by a papoavirus, we now have the ability to better stratify the risk for individual patients. There were also changes to proven medications in injection form. These are becoming more user-friendly, so patients no longer have to inject so frequently. Setbacks also occurred. A promising drug had to be withdrawn from the market last year due to unexpected side effects. Other new drugs with new mechanisms of action have the advantage of needing to be applied only infrequently, z.B. Intravenously every six months or only annually for two years in cycles of several days.
What else is crucial for MS therapy besides drugs??
Prof. Harms: There are a number of aspects, for example findings in the area of prevention. Thus, much new research has been done in recent years on risk factors, i.e., factors that drive MS, increase relapse frequency, and accelerate disability progression. One example is smoking. Excessive salt consumption could also have negative effects. But we are also increasingly aware of factors that may have a protective effect, such as vitamin D, of which MS patients usually have too little in their bodies. There are also many other research approaches to MS, e.g.B. on the role of intestinal flora or on the effect of parasites.
Recently, it has been suggested that drinking plenty of coffee may provide some protection or mitigate the disease. Progress has been made in all these areas, but there is often a lack of reliable evidence In addition to symptomatic therapy, rehabilitation is also important. Physiotherapeutic measures and the maintenance of vital activity. Motivating patients to do endurance sports within their means, living a fulfilling life with the disease, and also looking at the whole social environment is all critical.
Thank you very much for the interesting discussion.
Facts and figures
MS can have a drastic impact on everyday working life, as a study by the Multiple Sclerosis International Federation (MSIF) illustrates. The organization had surveyed more than 8 worldwide for this purpose.000 MS patients surveyed.
The spectrum of responses on occupational effects ranges from a reduction in working hours (around one third of respondents) to short-term breaks of a few months (around one quarter) to longer absences from work (around 10 percent). About 19 percent of respondents have changed jobs or changed their occupation due to the disease. It should be noted that several of the above effects can also apply at the same time, for example, if the job was changed after a loss of work or if the working hours were reduced after a change of activity. It is interesting that about one third of the respondents stated that the MS disease had not brought any change in the everyday working life at the time of the survey.
Did you know that ..
– Women are more than twice as likely to be affected by MS, according to the German Multiple Sclerosis Society (DMSG)? Researchers suspect that certain genetic or. hormonal conditions are responsible for it.
– Residents of climatically temperate zones are more likely to suffer from MS than people living closer to the equator? The reasons for this are unknown, but researchers suspect that sunlight and vitamin D formation play a role.
– one can make it far in politics despite MS disease? A prime example is Malu Dreyer, who has been Minister President of Rhineland-Palatinate since the beginning of 2013.
– most MS patients are not permanently dependent on a wheelchair? According to the University of Gottingen, about 15 percent of them are severely disabled in the later stages of the disease.
– a certain Eduard von Rindfleisch has contributed essential findings to MS research? In the middle of the 19th century, the German pathologist. It was discovered in the early twentieth century that nerve damage is caused by inflammation in the brain.
– MS is the most common organic disease of the central nervous system? According to the DMSG in Germany ca. 130.0000 people on it, according to figures of the Federal Insurance Office it is probably even more.
– there are specially trained service dogs for MS patients? The animals help the often physically severely limited patients with everyday tasks such as putting on socks.
– in the 1960s it was still wrongly amed that mercury in amalgam fillings could trigger MS? That's why mercury was banned from dental fillings without further ado.
– there are so-called McDonald criteria, which have nothing whatsoever to do with fast food? It is rather a diagnostic scheme for MS, named after the expert group around the researcher Ian McDonald.
– the British MS patient Eva Sundin, according to Spiegel online, managed a half marathon in 2014? Supported by friends, she needed a total of seven days for this, three kilometers a day.
Recommendations for patient information: Neurology/W. Paul; C.D. Reimers; B.J.