Multiple sclerosis (MS) – rehabilitation – a guide for patients and carers
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Multiple sclerosis (MS) is a chronic, autoimmune neurological disease in which the immune system attacks the body’s own nerve cells, leading to damage of the myelin sheaths surrounding neurons. MS most often affects young adults between the ages of 20 and 40, and is twice as common in women as in men. The disease follows a highly varied course – most patients experience alternating periods of relapses (flare-ups) and remission, while in some there is a progressive worsening of their neurological condition. Thanks to modern methods of treatment, MS has today become a chronic condition with which people can live active lives for many years. The article below explains, in accessible terms, what MS is, describes its symptoms, methods of diagnosis, the treatment of multiple sclerosis, the importance of rehabilitation, everyday life with the disease, and the support available to MS patients. We have followed the inverted-pyramid principle – the most important information is presented first.
What is multiple sclerosis (MS)?
Multiple sclerosis (Latin: sclerosis multiplex) is one of the most common chronic demyelinating diseases of the central nervous system, most likely with an autoimmune basis. In the course of MS, the immune system mistakenly attacks the myelin structure surrounding the nerve fibres, which leads to the formation of inflammatory lesions in the brain and spinal cord. This results in scattered damage to neurons in various parts of the nervous system – for example in the optic nerves, the brain (such as the corpus callosum) or the spinal cord. The myelin sheaths, the oligodendrocytes (the cells that produce myelin) and the nerve axons themselves all become damaged.
Causes
The causes of MS are not fully understood – both genetic and environmental factors influence the development of the disease. It is thought that certain gene variants increase susceptibility to autoimmune attack, while external factors (such as viral infections – particularly the Epstein-Barr virus (EBV) – vitamin D deficiency and smoking) may trigger the disease. The result is an inflammatory reaction directed against myelin, which causes demyelinating lesions to form. Over time, the process moves from inflammatory foci to neurodegeneration – the gradual loss of neurons.
Epidemiology
Around 2.8 million people worldwide live with MS, and in Poland approximately 50,000–60,000 people are affected. The disease most often becomes apparent in young adults; the peak age of onset is around 30. Women are affected almost twice as often as men. MS is one of the main causes of neurological disability in young people – it is the most common cause of neurological disability, second overall only to the consequences of injuries. Because it occurs in people of working age, the disease has major social consequences and represents a serious medical challenge.
Forms of MS
Several forms of multiple sclerosis are currently distinguished. The most common (around 85–90% of cases) is the relapsing-remitting form (RRMS), in which alternating periods of worsening symptoms (relapses) and remission are observed. In some patients, after years of RRMS, a secondary progressive form (SPMS) may develop, characterised by a gradual increase in permanent disability without clear relapses. Around 10–15% of patients experience the primary progressive form (PPMS) from the outset, in which fitness slowly deteriorates from the moment of onset, without acute relapses. Less commonly, a progressive-relapsing form is also distinguished. Increasingly, however, MS is treated as a single disease with a varied course – the boundaries between the forms are becoming blurred, and treatment is chosen individually for each patient and the activity of their disease.
Incurability versus the possibility of treatment
Multiple sclerosis is currently an incurable disease – we do not yet have a treatment that completely eliminates its cause. However, the available therapies make it possible to control the course of MS effectively: to ease symptoms, to treat relapses and to modify the course of the disease (reducing the frequency of relapses and delaying the development of disability). Thanks to advances in medicine, the course of MS today looks completely different from how it did a dozen or so years ago – the arrival of highly effective immunomodulatory drugs means that in most patients the progression of the disease can be completely halted or significantly slowed. The rest of this article discusses the symptoms, diagnosis and modern treatment of MS.
Symptoms of MS – the most common and the rarer symptoms
The symptoms of multiple sclerosis are highly varied and depend on the location of the demyelinating lesions within the nervous system. In the early stages the disease may cause non-specific, transient complaints that are difficult to link with MS straight away. The first symptoms usually appear suddenly (a disease relapse) and may include:
Visual disturbances – the first symptom of MS is often optic neuritis, manifesting as reduced visual acuity or blurred vision in one eye, pain in the eyeball on movement, and disturbances in colour vision. Patients also describe floaters or gaps in their field of vision.
Sensory symptoms – tingling, numbness or a sensation of electric current in the limbs, trunk or face. Characteristic are paraesthesias of the hands and feet, beginning without any obvious cause. An early sign can also be the so-called Lhermitte’s sign – a sensation of electric current running down the spine and into the limbs when bending the neck.
Muscle weakness – patients notice reduced strength in a limb or limbs, difficulty walking, tripping, and clumsiness of movement. A feeling of “heaviness” in the legs or arms is also common.
Balance and coordination disturbances – ataxia (uncoordinated movement), unsteadiness when walking, difficulty performing precise tasks, and intention tremor of the limbs.
Speech and swallowing disturbances – aphasia (difficulty with expression) or dysarthria (slurred, blurred speech) may occur, as well as swallowing problems (less commonly in the early phase).
Bladder and bowel dysfunction – urinary urgency, frequent urination or, conversely, urinary retention, as well as constipation resulting from disturbances in bowel innervation. Episodes of urinary or faecal incontinence sometimes occur.
Fatigue – so-called non-specific fatigue is one of the most common symptoms of MS – it affects up to around 80% of patients. Patients feel extreme tiredness and weakness out of all proportion to the activity performed, often worsening in the afternoon.
Increased muscle tone (spasticity) – many people develop muscle hypertonia – stiffness of the muscles, spasms and sometimes painful cramps (for example muscle cramps in the legs).
Psychological and cognitive symptoms – contrary to popular belief, depression affects a significant proportion of MS patients and can be one of the symptoms (both as a reaction to the illness and as a result of processes in the brain). Some people experience mood swings, apathy or euphoria (an inappropriately elevated mood). In addition, cognitive dysfunctions may appear, such as problems with memory, attention, information processing or planning. Cognitive disturbances are usually mild in early MS, but in around half of patients they may worsen over time.
Sexual dysfunction – an often overlooked but important problem – MS patients may experience reduced libido, difficulty achieving an erection in men or lubrication problems in women, as well as difficulty reaching orgasm.
It is worth stressing that the course of MS is different in every patient – there are no two people with an identical set of symptoms. In some, one or two of the above symptoms dominate; in others, many appear at once. Symptoms may be transient (partially resolving after a relapse) or become permanent, causing lasting limitations. MS relapses usually last from a few days to a few weeks and may leave behind some neurological deficit, especially if the inflammatory lesions were extensive or the relapse was not treated promptly.
Rarer symptoms of MS – although less typical, other complaints may also appear in the course of multiple sclerosis. These include, for example, neuropathic pain (nerve pain, such as attacks of facial pain resembling facial neuralgia – trigeminal neuralgia can be the first symptom of MS in a young person), itching of the skin without a rash, and brief paroxysmal neurological symptoms (so-called paroxysmal symptoms, such as short-lived weakness of the limbs after exertion, or the so-called Uhthoff’s phenomenon – a temporary worsening of symptoms after overheating of the body, for example after a hot bath). In severe cases, MS can lead to epileptic seizures (epilepsy occurs in a few per cent of MS patients) or to progressive, significant cognitive impairment in the late stage of the disease. Fortunately, thanks to disease-modifying treatment, many of these complications can now be avoided or postponed.
As the disease progresses and damage accumulates, the patient gradually loses physical fitness and may require help with everyday activities. In most patients, the first 5–10 years of the disease are characterised by a low level of disability (particularly with effective treatment). After a dozen or several dozen years, especially without treatment, many people develop more serious limitations – the need to walk with a stick or a walking frame, and some patients use a wheelchair. It must be emphasised, however, that modern therapies have significantly improved the outlook – today, more and more MS patients remain active and physically fit for a very long time.
Diagnosis of multiple sclerosis – classic and new methods
The diagnosis of MS is based on establishing dissemination of lesions in space and time – that is, the presence of at least two demyelinating lesions in different parts of the CNS, and the appearance of symptoms at different times (two separate relapses). Diagnosing MS is a multi-stage process that draws on a variety of techniques, from neurological examinations to modern biomarkers. The key diagnostic elements are:
Neurological examination – the foundation is a thorough history and examination by a neurologist. Assessing reflexes, muscle strength, coordination, sensation, vision and other nervous-system functions makes it possible to detect signs suggesting damage in various areas of the CNS. In MS, one often finds, for example, pyramidal movement disturbances (exaggerated reflexes, the Babinski sign), cerebellar ataxia, disturbances of deep sensation, past optic neuritis (a pale optic disc on examination of the fundus), and so on. It is also important to rule out other diseases that can produce similar symptoms (lupus, Lyme disease, vitamin deficiencies, spinal cord diseases, etc.).
Magnetic resonance imaging (MRI) – MRI of the brain and spinal cord is the gold standard in the diagnosis of MS. On MRI images (especially T2-weighted sequences and after gadolinium contrast) demyelinating lesions are visible – characteristic plaques scattered through the white matter of the brain and spinal cord. Typical are periventricular, subcortical, corpus callosum, brainstem, cerebellar and cervical spinal cord lesions. The current McDonald criteria (the applicable diagnostic criteria for MS, last updated in 2017) allow MS to be diagnosed once characteristic MRI lesions and oligoclonal bands in the cerebrospinal fluid have been found, even after the first relapse of the disease. MRI also makes it possible to rule out other changes (such as tumours or vascular lesions) and to monitor the course of MS during treatment.
Analysis of the cerebrospinal fluid (CSF) – if the diagnosis is not certain on the basis of symptoms and MRI, a lumbar puncture and CSF examination are performed. A typical indicator of MS is the presence of oligoclonal IgG bands in the cerebrospinal fluid (oligoclonal bands absent from the blood indicate intrathecal antibody synthesis). Positive oligoclonal bands are found in around 90% of MS patients. In addition, a raised IgG index is characteristic (indicating increased production of immunoglobulins in the CNS). Sometimes an increased concentration of myelin basic protein (MBP) is also observed in the CSF, reflecting an active demyelination process. The CSF examination also helps to rule out, for example, infections (multiple sclerosis is diagnosed only once other causes of the symptoms have been excluded).
Evoked potentials – electrophysiological tests are used in diagnosing MS – for example visual evoked potentials (VEP), somatosensory (SSEP) and brainstem auditory (BAEP). These make it possible to detect subclinical (asymptomatic) damage to the nerve pathways. For example, a prolonged latency of the visual potentials may indicate a past episode of optic neuritis, even if the patient no longer reports symptoms.
Laboratory and other imaging tests – in the differential diagnosis, blood tests are often performed (for Lyme disease, syphilis, HIV, B12 deficiency, inflammatory markers, autoimmune diseases, etc.) in order to rule out other conditions. An eye examination (visual field) helps to assess damage to the optic nerve. Sometimes, in atypical cases, a computed tomography (CT) scan is also performed. In recent years optical coherence tomography (OCT) has been introduced to assess atrophy of the retinal nerve fibres – which correlates with optic nerve damage and the degree of neurodegeneration in MS.
MS biomarkers – there is intensive research into new biomarkers that would make it easier to diagnose and monitor the disease. Although clinical examination and MRI are usually sufficient for diagnosis, researchers are studying many potential indicators of MS activity. For example, various cytokines, chemokines, adhesion molecules and antibodies against myelin proteins are analysed in the cerebrospinal fluid – but their diagnostic value is limited because of the great variability between patients. Great hopes are pinned on neurofilaments – structural neuronal proteins released when axons are damaged. In particular, the neurofilament light chain (NfL) in the blood has proved to be a promising biomarker. Studies have shown that a raised serum NfL concentration correlates with disease activity and with the progression of brain atrophy in MS patients. What is more, effective treatment lowers NfL levels, and the greater the reduction, the better the patient’s prognosis. Perhaps in the future, regular measurement of NfL from the blood will allow early detection of a disease flare-up or assessment of the response to treatment. Other biomarkers under study include glial fibrillary acidic protein (GFAP) as an indicator of astroglial damage, and anti-MOG antibodies (though these mainly relate to MOGAD-spectrum diseases). There is also a search for genetic markers that would make it possible to predict the response to specific immunomodulatory therapies – the development of MS pharmacogenetics may in the future help to personalise treatment.
Early diagnosis – thanks to progress in diagnostics (improved criteria, sensitive MRI, biomarkers) it is possible to diagnose MS ever earlier, often as early as after the first relapse (a so-called clinically isolated syndrome – CIS). Early confirmation of the diagnosis is enormously important, because it makes it possible to start disease-modifying treatment quickly, which translates into better outcomes over long-term follow-up. Current guidelines recommend starting MS treatment as soon as the diagnosis is confirmed, even after a single neurological episode, if the criteria are met (for example MRI lesions and the presence of oligoclonal bands). The sooner the inflammatory process is halted, the greater the chance of delaying the progression of the disease.
Modern methods of treating multiple sclerosis
The treatment of MS should be considered in three main areas: the treatment of acute relapses, symptomatic treatment, and treatment that modifies the course of the disease (so-called DMTs, disease-modifying therapies). Over the past two decades there has been a genuine breakthrough in MS therapy – from a lack of effective drugs in the 1990s we have moved to more than a dozen registered preparations that modify the course of the disease. This makes it possible to tailor treatment individually to the patient, taking into account the activity of the disease and the profile of the particular drug. The individual elements of therapy are discussed below.
Treatment of relapses (MS flare-ups) – an acute MS relapse is defined as new neurological symptoms, or a clear worsening of existing ones, lasting at least 24 hours (in the absence of infection or fever). The standard treatment for a more severe relapse is the administration of high doses of corticosteroids to quell the inflammation. Most often, intravenous methylprednisolone is used at a dose of 0.5–1.0 g daily for 3–5 days. Alternatively, a steroid can be given orally (for example prednisone at an equivalent dose). Steroid therapy usually speeds up the resolution of symptoms and shortens the duration of the relapse. In very severe relapses that do not respond to steroids, plasmapheresis (plasma exchange) or intravenous immunoglobulins are used, particularly when the relapse threatens important functions (for example severe paralysis or an acute bulbar syndrome). Treating a relapse does not affect the further course of the disease, but it minimises the immediate effects of the damage.
Symptomatic treatment – multiple sclerosis produces many chronic symptoms, which can be eased using appropriate pharmacological and non-pharmacological methods.
Examples of symptomatic treatment include:
Spasticity (muscle stiffness) – muscle-relaxant drugs such as baclofen, tizanidine and benzodiazepines help to reduce tone. In resistant spasticity, injections of botulinum toxin into selected muscles or the continuous delivery of baclofen into the subarachnoid space (a baclofen pump) are used. Unfortunately, in Poland botulinum toxin therapy for MS is not reimbursed, which is a gap in care.
Tremor and ataxia – these can be difficult to treat; rifampicin, clonazepam or gabapentin sometimes help, although the effects are limited. Physiotherapy plays a major role here.
Neuropathic pain – painkillers acting on neurogenic pain are used – pregabalin, gabapentin, duloxetine, amitriptyline or carbamazepine (for example in trigeminal neuralgia).
Bladder dysfunction – for an overactive bladder, antimuscarinic drugs (such as oxybutynin) or mirabegron are given. In the case of residual urine, intermittent catheterisation is used; drugs that aid bladder emptying (bethanechol) are sometimes helpful. For recurrent urinary tract infections – antibacterial prophylaxis.
Fatigue – this is a symptom that is difficult to treat. Good sleep hygiene, planning activities with rest breaks and moderate exercise all help. Pharmacologically, amantadine or modafinil are sometimes used, although their effectiveness can be modest.
Depression and mood disorders – these require psychological support and/or psychiatric treatment. Antidepressants (SSRIs, SNRIs) are often effective for depression in MS patients. Psychoeducation and therapy are important (more on this in the later section on living with MS).
Cognitive disturbances – cognitive functions are trained in neuropsychological rehabilitation. There are no specific drugs, but it is important to treat the disease itself – halting MS activity can improve cognitive function.
Sexual dysfunction – sexual education for the couple helps, and sometimes pharmacotherapy (for example PDE5 inhibitors for erectile dysfunction). An open conversation with a doctor is important – there are solutions that improve this area of life.
Other symptoms – in the case of epileptic seizures – antiepileptic drugs. For dizziness – betahistine or vestibular rehabilitation. Any persistent, troublesome symptom should be discussed with a doctor, because it is often possible to find ways to ease it.
Disease-modifying treatment (immunomodulatory)
This is the foundation of modern MS therapy. The aim is to limit the inflammatory activity of the disease – to reduce the number and severity of relapses, to prevent the formation of new demyelinating lesions on MRI, and to slow the increase in disability. From the 1990s to the present day, more than a dozen drugs that modify the course of MS (so-called DMTs) have been registered. They are divided into drugs of moderate effectiveness (so-called first line) and highly effective therapies (HET) of greater effectiveness but sometimes also a greater risk of adverse effects. The choice of drug depends on the activity of the disease, the safety profile and the patient’s preferences. Increasingly, the most effective therapies are recommended from the very start, in order to halt the disease process as early as possible. The main groups of DMTs used in MS are set out below:
First-line drugs (of moderate potency) – these include the beta interferons (given as subcutaneous or intramuscular injections) and glatiramer acetate. These were among the first drugs used in MS – they reduce the frequency of relapses by around 30%. First-line oral drugs are now also available: dimethyl fumarate (Tecfidera) and teriflunomide (Aubagio). Their effectiveness is also moderate (a reduction in relapses of around 30%), but the oral form makes them more convenient for the patient. In Poland the interferons (Avonex, Rebif, Betaferon) and glatiramer (Copaxone) have been reimbursed for years; fumarate and teriflunomide are also included in the drug programme.
Second-line and highly effective drugs (HET) – this group primarily comprises therapies targeting lymphocytes. A breakthrough was the introduction of natalizumab – a monoclonal antibody that inhibits the passage of lymphocytes into the CNS. Natalizumab, given intravenously every 4 weeks, significantly reduces relapses (by around 70%) and MRI activity, but it carries the risk of a rare complication (PML, or progressive multifocal leukoencephalopathy, especially in people who carry the JC virus). Another important drug is fingolimod (Gilenya) – the first oral therapy of high effectiveness, a modulator of sphingosine-1-phosphate receptors, which “traps” lymphocytes in the lymph nodes. Then there is alemtuzumab (Lemtrada) – an anti-CD52 antibody targeting lymphocytes, given as two short series of infusions, which reduces the lymphocyte population over the long term (a so-called induction regimen, of high effectiveness but with a risk of secondary autoimmune diseases). A modern drug is ocrelizumab (Ocrevus) – an antibody against B lymphocytes (CD20), effective both in the relapsing form and as the first drug to show effectiveness in the primary progressive form of MS (PPMS). Ocrelizumab is given intravenously every 6 months and reduces disease activity by around 70%. Another anti-CD20 drug is ofatumumab (Kesimpta) – given subcutaneously every month, which is a more convenient form for the patient. Finally, cladribine (Mavenclad) – an oral drug given in pulses (over a few days per month for 2 years), acting cytotoxically on lymphocytes (a purine analogue). Cladribine and ofatumumab are also counted among the new generation of highly effective therapies (HET). In the case of an aggressive course of MS, when first-line drugs are insufficient, patients move straight on to these intensive therapies (fingolimod, natalizumab, ocrelizumab, alemtuzumab or ofatumumab) – in Poland these have so far been classified as “second line”, although there is now a move towards abolishing the rigid division into lines of treatment.
The most recent developments – in recent years several new preparations for MS have appeared. In November 2022 the Polish drug programme was expanded to include three new drugs for the relapsing-remitting form: subcutaneous ofatumumab (Kesimpta) and two oral S1P modulators – ponesimod (Ponvory) and ozanimod (Zeposia). Then, in July 2023, reimbursement was approved for cladribine (infusion and tablets) and ocrelizumab for Polish patients. In addition, after years of efforts, a subcutaneous form of natalizumab has been available in Poland since 1 April 2024, which is an important breakthrough – subcutaneous administration shortens the length of the hospital visit and improves patient comfort. Administering the drug as a subcutaneous injection (once a month) is just as effective as the previous intravenous infusions, and much more convenient for the patient. In Europe this form was registered in 2021, and in Poland it is now being introduced into the drug programme, which was an important demand of patient communities. As a result, Polish patients now have access to all the main drugs and forms of therapy registered in the EU.
Treatment of the progressive forms – for many years, patients with the progressive forms (PPMS, SPMS) were practically deprived of effective drugs. The situation is now improving. In primary progressive MS the standard is ocrelizumab (the only approved drug that modifies the course of PPMS). In secondary progressive MS, interferons or mitoxantrone (a chemotherapeutic agent rarely used because of its cardiotoxicity) are still used, but a new drug is siponimod (Mayzent) – an oral S1P modulator that has been reimbursed in Poland since late 2022 and offers hope of slowing SPMS. Research is ongoing into other therapies for the progressive forms, including ibudilast and protective molecules that inhibit degenerative processes.
The choice of a particular disease-modifying drug depends on many factors:
- the activity of the MS (the frequency and severity of relapses, changes on MRI),
- the drug’s safety profile (for example contraindications, the patient’s plans regarding pregnancy),
- preferences regarding the route of administration (injection vs tablet vs infusion), as well as availability.
In Poland, since the end of 2022 there has been a single integrated drug programme, B.29, under which doctors can use practically all registered MS drugs in accordance with their registered indications. This is enormous progress – earlier administrative restrictions (the division into a first and second programme) have been removed, which greatly facilitates optimal, modern treatment. Thanks to this change, patients can be referred more quickly to the therapies that are right for them, without unnecessary delay. As experts stress, wider access to highly effective drugs means that patients can live and work normally, and society benefits from having people who are active in the workforce rather than disabled.
Therapies of the future
Research is ongoing into further breakthrough methods of treating MS. Great interest surrounds autologous haematopoietic stem cell transplantation (AHSCT) – a procedure in which the immune system is “reset” by means of chemotherapy followed by a transplant of the patient’s own haematopoietic stem cells. In studies, this intensive therapy has shown the ability to halt the disease over the long term, and even to bring improvement in some patients with a very aggressive course of MS. In Poland, AHSCT is carried out in selected centres (for example Katowice) in carefully qualified patients, although it is not yet a standard of care. Another direction of research is drugs that stimulate remyelination – attempts to rebuild damaged myelin (for example antibodies that inhibit the MAG protein). Work is also under way on a vaccine against the Epstein-Barr virus, which is considered a causative factor in MS – hypothetically, in the future, vaccinating the young population against EBV could reduce the incidence of multiple sclerosis. For now, however, that is a distant prospect. Nevertheless, even now we can say that MS is one of the most rapidly developing areas of therapy – the progress in recent years has been impressive, and current treatment options represent one of the greatest advances in modern medicine.
Rehabilitation in MS – scope and effectiveness
Rehabilitation is a crucial complement to the pharmacological treatment of multiple sclerosis. Although it cannot cure the disease itself, properly conducted neurological rehabilitation can significantly improve the fitness and quality of life of MS patients, reduce the severity of symptoms and delay the progression of disability. The rehabilitation programme should always be tailored individually to the patient – different in the early stage of the disease and different in advanced disability. A multidisciplinary approach is important: cooperation between the neurologist, physiotherapist, occupational therapist, speech and language therapist, psychologist and other specialists.
The scope of rehabilitation in MS includes, among other things:
Physical therapy – exercises that improve muscle strength, coordination and balance and increase the range of motion in the joints. Regular exercise (both under the guidance of a physiotherapist and independently at home) helps to prevent muscle wasting and contractures, and also reduces spasticity. Gait training, learning to move about safely, balance exercises (for example on exercise balls) and exercises that improve hand-eye coordination are all used. It is important to learn how to carry out everyday activities correctly, in order to save energy and not to overload weakened muscle groups.
Occupational therapy – this aims to maintain the patient’s independence in everyday life. The occupational therapist teaches compensatory techniques for carrying out activities (dressing, preparing meals, personal hygiene), suggests adaptations to the home environment (grab bars in the bathroom, removing architectural barriers) and recommends using assistive equipment (sticks, walking frames, wheelchairs) at the right time. The aim is for the patient to be able to live independently for as long as possible, despite any limitations.
Rehabilitation of cognitive function – where there are problems with memory or concentration, a psychologist or neuropsychologist carries out special exercises to improve these functions – for example memory training, solving tasks that stimulate attention, and learning compensatory techniques (noting down information, using organisers). Such neuropsychological rehabilitation helps patients cope better with intellectual challenges at work and in everyday life.
Speech and language therapy – for people with speech or swallowing disorders, speech therapy and speech rehabilitation are recommended. Articulation exercises can improve the clarity of speech, and exercises for the muscles of the throat and gullet can make swallowing food easier and prevent choking.
Physical medicine – rehabilitation often makes use of physical treatments to ease symptoms. For example, hydrotherapy – exercising in a pool or a warm jacuzzi can relax tense muscles and improve the range of motion (although one must be careful of overheating, because it worsens symptoms in some patients – cooler water is recommended). Local cryotherapy can reduce pain and spasticity. Electrical muscle stimulation (for example FES to correct foot drop in the case of foot muscle paresis) aids walking. In some centres, magnetic stimulation of the brain or spinal cord is used, which according to studies may have a beneficial effect on fatigue and quality of life.
Modern technologies – rehabilitation increasingly makes use of new technologies – rehabilitation robots help with gait training (for example INNOWALK PRO – an active standing frame for learning to walk), as well as computer systems such as PABLO / TYMO, which enable balance and movement coordination exercises through rehabilitation games.
The effectiveness of rehabilitation – research and clinical experience confirm that systematic rehabilitation improves the physical fitness (muscle strength, walking ability and balance) and functional ability of MS patients. Importantly, rehabilitation also has a positive effect on wellbeing and mental state – it gives a sense of agency, reduces depression and improves quality of life. People who are regularly rehabilitated show a slower increase in disability than those who neglect their exercises. The best results come from a comprehensive approach that combines different forms of therapy and is carried out continuously or in cycles (for example rehabilitation stays 2–3 times a year for 2–4 weeks).
In Poland, people with MS can access rehabilitation under the National Health Fund (NFZ) (as outpatients or in day centres, and in the case of significant disability – also at home). There are specialist centres and rehabilitation stays dedicated to MS patients, where patients exercise under the guidance of experienced therapists while also mixing with others facing similar problems, which provides the added benefit of psychological support. Rehabilitation should be a continuous process – even if a patient feels well, preventive exercise helps to maintain a functional reserve for harder times. In keeping with the “use it or lose it” principle – physical activity within one’s capabilities is very important at every stage of MS.
Living with MS – quality of life, psychology and everyday coping
Living with a diagnosis of multiple sclerosis is a major challenge for both the patient and their loved ones. The disease often affects young, active people who suddenly have to face uncertainty about the future and possible limitations. However, the right coping strategies, support from those around them and a conscious attention to health make it possible to lead a satisfying, active life despite MS.
The quality of life of MS patients
Studies show that MS significantly affects quality of life (QoL), particularly in the physical domain. The quality of life of MS patients is markedly poorer in the physical dimension than in the mental one – limitations in mobility, fatigue and pain reduce day-to-day comfort more than emotional problems alone. Even so, psychosocial support is extremely important – it helps to maintain good mental wellbeing, which in turn makes it easier to cope with physical challenges. Importantly, as mobility disability increases (for example on reaching 6.5 points on the EDSS scale, which means the constant need for support when walking), there is a further deterioration in quality of life in the physical aspect. This is why it is so important to maintain fitness for as long as possible – through treatment and rehabilitation – so that the patient can retain their independence.
Psychological support
A diagnosis of MS is often accompanied by shock, anxiety about the future, and even a sense of grief at the loss of full health. The advice of a psychologist or psychotherapist, who can help to work through these emotions and to learn constructive methods of coping with stress, is very helpful. Cognitive behavioural therapy can, for example, help in the fight against depression or anxiety disorders, which affect a significant proportion of patients. There is no need to be ashamed of seeking help – mental health is just as important as physical health. A well-supported patient who has support and understands their disease usually cooperates better in treatment and leads a healthier lifestyle.
Coping day to day
Over time, MS patients learn to listen to their bodies and to adjust their activity to their capabilities. Key strategies include:
Planning activity and rest – because of fatigue, it is worth spreading tasks throughout the day, interspersing them with breaks for recovery. A short nap or a rest in the middle of the day can restore energy.
Avoiding overheating – many people with MS experience a worsening of symptoms in high temperatures (Uhthoff’s phenomenon). Long, hot baths, saunas and sunbathing in the heat should be avoided. On hot days, air conditioning or cool showers can help.
Physical activity within one’s capabilities – regular, moderate physical exercise (walking, swimming in warm water, stretching exercises, riding a stationary bike) is beneficial – it improves mood, eases spasticity and can even reduce fatigue by improving fitness. It is important to choose activity sensibly and not to overexert oneself.
Diet and lifestyle – although there is no single “MS diet”, a healthy, balanced diet rich in vegetables, fruit, fibre, lean protein and unsaturated fats (vegetable oils, sea fish) is recommended. Vitamin D supplementation is advisable, unless blood levels are already normal – numerous studies suggest that vitamin D deficiency may favour MS relapses, and that supplementing it has a beneficial immunomodulatory effect. Avoiding stimulants: giving up smoking is strongly recommended – smoking accelerates the progression of disability in MS and increases the risk of a more severe course of the disease. Alcohol in moderate amounts is not forbidden, but overuse harms general health and can interact with medications.
Learning about the disease – the more a patient knows about MS, the better they are able to live with it. It is worth using reliable sources of knowledge (guides, medical websites, patient associations). Understanding the mechanisms of the disease and how the drugs work helps in cooperating with the doctor and following recommendations.
The role of the carer and support from loved ones – carers (often family members) play an enormous role in the life of a patient at an advanced stage of MS, but they are also important at the beginning – as emotional support. For loved ones it is also a difficult situation – they see the suffering of the person they love and have to adjust family life to a new reality. It is crucial that the carer supports the patient but does not do everything for them, especially in the milder stages. Maintaining as much of the patient’s independence as possible is important for their sense of self-worth. The carer should encourage rehabilitation, support the patient in following medical recommendations (for example by helping them remember to take their medication) and accompany them to check-up appointments if the patient wishes. Empathy and patience are essential – a person with MS may have worse days, feel low or become easily irritated because of the limitations the disease imposes. A good carer knows how to listen and show understanding.
It is important that carers, too, make use of support – whether from other families in a similar situation (for example support groups for the carers of chronically ill people) or from the advice of specialists (a psychologist, a social worker, a lawyer regarding entitlements). Carers must not forget about their own health – they too need to look after themselves, take breaks and find time to rest. If necessary, the family should consider using respite care (the temporary replacement of the carer by an institution or another person) – to prevent the carer from becoming burnt out and exhausted.
Family planning and pregnancy
Because MS mainly affects women of reproductive age, the question of pregnancy is a common dilemma. The good news is that women with MS can have children, and pregnancy often proceeds normally for them. Pregnancy itself usually reduces disease activity (in the final trimester the frequency of relapses physiologically falls), although in the 3–6 months after childbirth the risk of a relapse rises. It is crucial to plan the pregnancy together with a neurologist. Some MS drugs are contraindicated during pregnancy (and must be stopped in advance), while others can be safely continued. For example, interferons and glatiramer acetate are relatively safe, but teriflunomide requires several months of elimination from the body before conception, and fingolimod and ozanimod must be discontinued. More and more new therapies allow for a longer break to be planned – for example, after two cycles of alemtuzumab a patient can become pregnant during the treatment-free period. The appearance of long-acting forms (such as antibodies given infrequently) raises the question of their effect – for example, ocrelizumab is recommended to be stopped around a year before pregnancy. In summary, pregnancy should be consciously planned: during a period of stable disease and after consultation regarding medication. It is also a good idea to agree a plan of action with an obstetrician-gynaecologist and a neurologist (for example, whether to resume treatment straight after childbirth, or whether to breastfeed – breastfeeding also partly protects against relapses, but intensive treatment usually requires breastfeeding to be stopped). Pregnancy in a woman with MS is a higher-risk pregnancy, mainly because of possible disability, but the disease itself does not significantly increase the risk of birth defects in the child or of obstetric complications. It is worth stressing that MS does not cause infertility, and many patients – both women and men – start families and have healthy children.
Working and social life
As far as possible, MS patients should remain in work for as long as they can. A good job can take one’s mind off the illness and give satisfaction, as well as financial independence. Of course, adaptations are sometimes needed – reducing working hours, moving to less demanding duties, working from home, or an appropriate adaptation of the workstation (an ergonomic chair, frequent breaks to move about). Polish law provides certain concessions for employers who employ people with a disability certificate, which can make it easier to stay in work. It is worth knowing your rights (for example an additional 15-minute break at work for a person with a moderate or significant degree of disability, a shorter working week, additional rehabilitation leave, etc.). Social life and hobbies are also important – a chronic illness should not rob one of the joys of life. Passions, meeting friends, taking part in cultural or sporting events (within one’s capabilities) are all highly advisable. Many people find it helpful to get involved in the work of patient organisations, where they can meet people with similar experiences, exchange advice and work together to improve the situation of MS patients.
In summary, living with MS requires adaptation and a conscious attention to oneself, but with the current state of knowledge and available therapies, most people with this disease can pursue their life plans – studying, working, starting families, travelling. Multiple sclerosis is a marathon, not a sprint – pacing yourself and making use of the available resources (treatment, rehabilitation, support) allows you to maintain a good quality of life for many years after diagnosis.
Support for MS patients in Poland – benefits and patients’ rights
In Poland there is an extensive system of support for people with multiple sclerosis and their families. It covers medical and social benefits, as well as the work of patient organisations. Here are the most important forms of support for MS patients:
Medical care under the NFZ – patients with a diagnosis of MS remain under the care of a neurology clinic. Disease-modifying drugs are available free of charge under the B.29 drug programme (once medical criteria are met) – at present all the modern therapies that are standard in Europe are also reimbursed in Poland. Hospital stays on neurology wards (for example to administer intravenous treatment, to carry out diagnostics or for neurological rehabilitation) are financed from public funds. In addition, the NFZ provides access to rehabilitation (on an outpatient, home or inpatient basis – depending on the patient’s condition and the doctor’s recommendations). Patients can take part in rehabilitation stays co-financed by PFRON, if they hold a disability certificate.
Disability certificate – people with MS can apply for a certificate of the degree of disability (mild, moderate or significant) at municipal/district disability assessment boards. MS, especially with limitations in fitness, usually qualifies for at least the moderate degree. This certificate entitles the holder to various concessions and benefits: among others, transport discounts, the rehabilitation tax relief in the annual income tax return, a parking card (in the case of significantly reduced mobility), co-funding for orthopaedic supplies and assistive equipment (such as wheelchairs and orthoses) from PFRON, rehabilitation stays, and additional entitlements at work (such as the aforementioned breaks or shorter working hours).
Financial benefits – if, because of MS, a patient is unable to work, they may apply for an incapacity-for-work pension (subject to the required insurance record). In the case of significant disability and the need for constant care, a care supplement is available (for pensioners) or a care allowance (for those without benefits). People with MS can also make use of PFRON co-funding for orthopaedic items, assistive devices (such as catheters and incontinence pads) and the removal of architectural barriers in their homes.
The Polish Multiple Sclerosis Society (PTSR) – this is the largest patient organisation for MS patients in Poland. PTSR runs regional branches and local groups in many towns and cities. It offers free advice (medical, psychological, legal), support groups, workshops and rehabilitation stays, as well as social assistance for those in need. Within PTSR there is, among others, an Ombudsman for the Rights of People with MS, who intervenes in cases where patients’ rights have been breached and provides legal information to patients. PTSR also runs a helpline (tel. 801-313-333, open on weekdays), where you can obtain information about treatment, rehabilitation and your entitlements. Local PTSR groups often organise group rehabilitation, exercise sessions, social gatherings and recreational rehabilitation stays. This is not only a form of therapy but also an opportunity to exchange experiences between patients.
The SM – walcz o siebie Foundation – this is an active foundation set up by people with MS (including Malina Wieczorek). It engages in advocacy work (it was partly thanks to their efforts that subcutaneous natalizumab was introduced), organises public campaigns to raise awareness of MS, and offers psychological and educational support to patients. Many other foundations (such as the StwardnienieRozsiane.info Foundation and the NeuroPozytywni Foundation) also work in the field of education and helping patients.
Social welfare centres and assistants – people with significant disability can make use of social welfare help – for example care services (care at home for a few hours a day) and specialist care services for people with neurological disorders (rehabilitation exercises at home, help with running errands, etc.). The role of the disability assistant, who can accompany a person in everyday activities outside the home (going for a walk, to an office, to a cultural event), is developing more and more. These services are often free or available for a small fee, financed from local-government funds or state programmes (such as the “Personal Assistant for a Disabled Person” programme).
The Patients’ Rights Ombudsman and government projects – the Patients’ Rights Ombudsman (RPP) runs special projects dedicated to MS patients – for example the “A Minute for MS” campaign, aimed at raising public awareness of the disease and combating its stigmatisation. Where there are problems with access to treatment or rehabilitation, the RPP intervenes with providers or with the NFZ. In case of difficulty, a patient can call the RPP helpline (800-190-590) for help. In addition, in view of the growing number of patients, in recent years the Ministry of Health has introduced many favourable systemic changes – including the aforementioned integrated drug programme, reimbursement of new drugs, and the broadening of indications (such as siponimod therapy for SPMS). There are, however, still “blank spots” – for example the lack of reimbursement for botulinum toxin in spasticity, or limited access to rehabilitation, which patient organisations are fighting to address.
Support groups and community – beyond the official structures, contact with other patients can be an enormous source of support. On the internet there are discussion forums, Facebook groups and blogs run by people with MS, where they share advice and stories. Meeting someone who has lived with MS for years and still enjoys life can give heart to those who have just been diagnosed. PTSR and other organisations often run social gatherings, group outings and even sporting events for patients (for example para-sports events). All of this builds the sense that you are not alone with the disease.
Patients’ rights – people with MS have the same rights as any other patients – to informed participation in treatment decisions, respect for their dignity, and access to information and medical records. It is worth patients knowing their rights, particularly in the context of assessments and benefits. To this end, one can make use of guides (for example the Guide for MS Patients available on the pacjent.gov.pl portal) or the advice of lawyers who work with patient organisations.
The availability of support in Poland is steadily improving. The number of people treated in drug programmes has doubled over the past 7 years or so (from around 10,000 in 2015 to around 20,000 in 2022), which reflects greater activity within the system. Nevertheless, challenges remain – for example a shortage of neurologists and physiotherapists, which limits the frequency of rehabilitation. This is why it is so important to voice needs clearly – associations often do this on behalf of patients, but every patient and carer can also individually claim the help they are entitled to.
Prognosis in MS – the length and quality of life with the disease
The prognosis in multiple sclerosis has improved enormously over the past few decades. In the past, before the era of modern therapies, after 20–25 years of the disease a significant proportion of patients already needed help with walking or used a wheelchair, and life expectancy could be around 5–10 years shorter than in the general population. Today, thanks to effective drugs and rehabilitation, many patients live to a ripe old age, and some retain good fitness for several decades after diagnosis.
Factors affecting prognosis
Many factors influence the course of MS and the long-term prognosis:
The form of the disease at onset – the relapsing-remitting form generally has a better prognosis than the primary progressive one. A long relapsing-remitting phase (a dozen or more years without major disability) is a good prognostic sign. Conversely, a rapid increase in deficits in the first years suggests a more severe course.
The frequency and severity of relapses – the rarer and less severe the relapses, the smaller the cumulative neurological damage. Relapses affecting the optic nerve, or sensory relapses, have a slightly better prognosis than those causing ataxia or paresis. The complete resolution of symptoms after relapses is a favourable sign.
MRI results – a small number of demyelinating lesions on brain MRI at the start of the disease is associated with a slower progression of MS, whereas a heavy lesion burden and the rapid appearance of new lesions on subsequent scans are associated with a worse prognosis. Modern markers, such as the aforementioned neurofilaments, can help to predict the aggressiveness of the disease – a high NfL level suggests more active MS and a risk of faster deterioration.
Early initiation of effective treatment – this is currently one of the most important factors improving prognosis. Patients in whom disease-modifying drugs were applied quickly (especially the highly effective ones) have a significantly lower risk of progression to severe disability than people who were untreated or treated late. Highly effective treatment can halt the progression of the disease in most patients – which is an enormous change compared with the era before these therapies.
Sex and age at onset – women, although they are affected more often, statistically have a slightly milder course and reach a high degree of disability later than men. A younger age at onset (for example before 30) gives more “time” with the disease, but is also usually associated with a slower rate of progression (very late onset, after 50, is often a primary progressive form). Onset in early childhood, on the other hand, is rare, and the prognosis is the subject of research – it seems that children have frequent relapses but recover better; the true effects become apparent after many years.
Coexisting conditions and lifestyle – the presence of other diseases (such as diabetes, severe obesity or cardiovascular disease) can worsen the course of MS – general health affects the body’s ability to cope with damage. Smoking has been linked with faster progression of disability – which is why giving up smoking after diagnosis is an important element in improving prognosis. Maintaining physical and social activity, on the other hand, favours the preservation of fitness.
Pregnancy – the question of the effect of pregnancy on prognosis is complex. It used to be thought that pregnancies could worsen MS in the long term, but current studies do not confirm this – it seems that multiple pregnancies do not ultimately worsen the degree of disability in women with MS. What matters more is planning treatment appropriately around the pregnancy (so as not to allow active, untreated disease for a longer period).
The initial course – doctors sometimes speak of so-called red flags – if, for example, the symptoms are multifocal from the very start, the patient does not return to full fitness between relapses, and there are already very many lesions on MRI in the first year, then the prognosis is more serious. A single-focus onset (for example isolated optic neuritis) and low MRI activity, on the other hand, often herald a slow course.
Life expectancy – the average life expectancy of people with MS is gradually approaching that of the general population. According to more recent data, the difference is now only around 5–6 years (to the disadvantage of MS patients), and the outlook is steadily improving. Many patients live to 70–80 years of age. Of course, severe disability can secondarily lead to complications (such as infections and complications of immobility), which shorten life. This is why preventing long-term disability is crucial – then MS patients can live almost as long as their healthy peers.
Quality of life – prognosis is not just about the number of years, but above all about the quality of those years. Here comprehensive care plays an enormous role. Patients who are actively treated, rehabilitated and supported can lead full, high-quality lives for a long time – working, pursuing hobbies and taking part in family life. It is important for the disease to be kept under constant control (regular visits to the neurologist, periodic MRI, blood tests), with the patient being an informed partner in treatment. Then therapeutic decisions (for example changing a drug if the current one is ineffective) are made quickly and increase the chances of maintaining remission.
An example of improved prognosis – just 20 years ago, after 15 years of MS only around 20% of patients had no significant disability. Today, in the age of immunotherapy, that proportion is much higher. Some patients, in whom highly effective treatment was applied early, remain practically symptom-free for many years – their disease is kept in a “clinically silent” state. Such people are sometimes said to have achieved NEDA (no evidence of disease activity), which means no relapses, no progression of disability and no new lesions on MRI. This is currently the goal of MS therapy.
Of course, MS can still be a severe disease, especially in people who do not respond to treatment or in whom a long-lasting progressive form has developed. At an advanced stage, patients require help with most activities and may be confined to a wheelchair or bed. In such cases, too, it is possible to try to improve patients’ quality of life, for example through appropriate palliative, pain-relieving and nursing care and psychological support.
In summary, the prognosis in multiple sclerosis is now much better than it used to be. Thanks to treatment, many patients maintain their fitness and activity into old age. The key is early diagnosis, prompt initiation of effective therapy, consistency in treatment and rehabilitation, and making use of the available support. MS is a disease with an unpredictable course, but more and more often it is possible to tame that unpredictability with medicine. As one specialist put it: “Today multiple sclerosis is a completely different disease, with a different course and prognosis than it had even a dozen or so years ago” – and this gives hope that the future for people with MS will be better still.
The most important information in brief
Multiple sclerosis is a chronic autoimmune disease in which the immune system destroys the myelin sheaths in the brain and spinal cord. This leads to numerous neurological symptoms. MS most often begins in young adults (aged 20–40) and affects women twice as often. The cause is not fully understood – genetic and environmental factors play a role (such as viruses, vitamin D deficiency and smoking). The disease has various forms, the most common being relapsing-remitting (alternating flare-ups and remissions). MS is incurable, but thanks to treatment it can become a chronic disease with a milder course.
The symptoms of MS are varied. Common initial symptoms include visual disturbances (such as optic neuritis), tingling and numbness of the limbs, muscle weakness (for example in one leg), balance problems and double vision. Many people also experience chronic fatigue, sensory disturbances, increased muscle tone, as well as psychological symptoms such as depression or memory problems. Symptoms appear in relapses, which may partly resolve. Over time, difficulty walking, paresis, bladder and bowel dysfunction and tremor may occur. Every patient has an individual course – symptoms can be mild or severe. It is important to see a neurologist early if you notice worrying symptoms (such as blurred vision in one eye or sudden numbness of the limbs), because early diagnosis improves the prognosis.
The diagnosis of MS is based mainly on neurological examination and magnetic resonance imaging (MRI) of the brain and spinal cord. Demyelinating lesions visible on MRI are characteristic. Examination of the cerebrospinal fluid is also often performed – the presence of oligoclonal IgG bands confirms the intrinsic inflammation typical of MS. Testing evoked potentials (for example visual ones) can be helpful. The doctor must rule out other diseases with similar symptoms. New biomarkers are in the research phase – for example the concentration of neurofilaments in the blood may in the future help to monitor disease activity. Thanks to sensitive diagnostic criteria (the McDonald criteria), MS can be diagnosed early, often as early as after the first relapse, which makes prompt treatment possible.
The treatment of multiple sclerosis is divided into three aspects: the treatment of relapses (flare-ups), symptomatic treatment and, above all, treatment that modifies the course of the disease (DMT). Relapses are treated with intravenous corticosteroids (for example methylprednisolone for 3–5 days), which speeds up the resolution of symptoms. In severe relapses, plasmapheresis is used. Symptomatically, one can ease, among other things, spasticity (with muscle-relaxant drugs and rehabilitation), neuropathic pain (painkillers for nerve pain), urinary disturbances (with urological drugs), fatigue (through planning rest, rehabilitation and sometimes stimulant drugs), depression (with antidepressants and therapy) and sexual dysfunction (pharmacotherapy and education).
The greatest progress has been made in treatment that modifies the course of MS. There are currently more than a dozen modern drugs available that inhibit the activity of the disease – reducing the frequency of relapses and delaying the progression of disability. These include: the beta interferons and glatiramer (older injectable drugs), oral therapies (such as dimethyl fumarate, teriflunomide, fingolimod, ozanimod, ponesimod and cladribine) and monoclonal antibodies (such as natalizumab, ocrelizumab, alemtuzumab and ofatumumab). The choice of drug depends on the activity of the MS – in milder disease one starts with interferons or oral drugs, and in highly active disease highly effective therapies (HET) such as natalizumab, ofatumumab, ocrelizumab or alemtuzumab are used straight away. Studies show that the early use of effective drugs can significantly slow or halt MS in most patients. In Poland, since 2022, all of these drugs have been reimbursed under a single programme, which allows doctors to tailor therapy individually. Treatment is long-term (many years, often lifelong), but thanks to it many patients live active lives without serious disability. In the future it is possible that further methods will emerge – research is under way into gene therapy, stem cell transplantation and drugs that regenerate myelin.
Quality of life and coping with MS: Although MS remains a chronic disease, with appropriate treatment and support many patients lead active, full lives. Psychological support is very important – both professional (a psychologist, support groups) and from the family. Patients should look after a healthy lifestyle: a balanced diet (with vitamin D supplementation after consultation), avoiding stimulants (giving up smoking is a must!), moderate physical activity and skilful management of energy throughout the day. Getting enough sleep and avoiding stress are important, although the latter can be difficult – relaxation techniques, meditation or hobbies that take one’s mind off the disease can help. Carers (partners, family) play an enormous role – their understanding, patience and help in harder moments make coping with MS much easier. At the same time, carers should also seek respite and support for themselves, in order to avoid burnout. Family planning is possible – women with MS can become pregnant and give birth to healthy children; all that is required is to plan treatment before and after pregnancy with a doctor. In summary: a diagnosis of MS changes life, but it does not cancel out dreams and plans. Thanks to awareness of the disease and the use of available methods, “life with MS” can be filled with activity, passions and relationships, just as for healthy people.
Support for patients in Poland: People with MS can make use of many forms of help. Immunomodulatory treatment and tests are financed by the NFZ under the drug programme – the patient receives the drugs free of charge if they medically qualify. Rehabilitation (outpatient or inpatient) is available with a referral, though there can be waiting lists – it is also worth making use of stays co-financed by PFRON. Obtaining a disability certificate gives access to various concessions (transport, tax) and benefits (pensions, allowances). The Polish Multiple Sclerosis Society (PTSR) and other foundations (such as SM – walcz o siebie) offer free advice, support groups, psychological and legal help and local rehabilitation and social activities. There is a PTSR helpline (tel. 801 313 333) and an Ombudsman for Patients with MS (email: [email protected]), who help to resolve patients’ problems with access to therapy or benefits. If necessary, one can obtain help from social welfare – care services or a disability assistant. In large cities there are specialist MS clinics providing comprehensive care. Patients and carers should know their rights and not hesitate to ask for help – the system is becoming increasingly friendly to MS patients, thanks in part to the activity of patient organisations and growing public awareness.
Prognosis: The outlook for people with MS is now much better than it used to be. The average life expectancy with MS is only slightly shorter than average – many patients live to old age. The key factors improving prognosis are early and effective treatment (ideally straight after diagnosis) and maintaining activity (physical, mental and social). In a significant proportion of patients who are well treated, the disease can be kept in check – without relapses and with minimal MRI changes for many years. On the other hand, untreated or aggressive MS can lead to severe disability, which is why proper care is so important. In general, around 15–20 years after onset a certain proportion of patients will need help with walking, but thanks to therapy this time is being extended. There are patients who, 20–30 years after diagnosis, still function independently and actively. Modern drugs have changed the prognosis for MS to a far more optimistic one – as Professor Krzysztof Selmaj said, “there has been a genuine breakthrough – from a disease without treatment, MS has become a condition that we can effectively control”. It is important, however, to take an individual approach – every patient has their own unique disease history. With appropriate medical and social support, people with MS can pursue their life plans and remain full participants in society despite the disease.
Sources:
Kawalec P. et al., Medycyna Rodzinna 3/2014
Gil-González I. et al., BMJ Open 2020 (quality of life in MS)
Mirska D., Neurologia – Termedia 27.03.2024
Bejer A. et al., Medycyna Ogólna 2015
Wender M., Aktualności Neurologiczne 2009
Serwis Zdrowie PAP 24.03.2023
PTSR interview with Prof. Selmaj, Aptekarz Polski 30.05.2023
Leki.pl guide 2022
information from the Polish Multiple Sclerosis Society.
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