What age is ms usually diagnosed. Multiple Sclerosis in Men: Age of Onset, Prevalence, Symptoms, and Treatment
At what age do men typically develop multiple sclerosis. How prevalent is MS in men compared to women. What are the most common symptoms of MS in male patients. How does MS progression differ between men and women. What treatment options are available for men with MS. How does MS impact life expectancy in men. Can MS affect male fertility and sexual function.
Age of Onset for Multiple Sclerosis in Men
Multiple sclerosis (MS) can develop at any age, but it is most commonly diagnosed between the ages of 20 and 50. While this age range applies to both men and women, there are some differences in how MS affects men specifically:
- Men tend to be diagnosed with MS slightly later in life compared to women
- The average age of onset for men is around 32 years old
- MS is less common in men under 20 and over 50 compared to women
- About 5% of MS cases are diagnosed in children under 18
Do certain factors influence the age of MS onset in men? Genetic predisposition, environmental triggers, and lifestyle factors can all play a role in when MS symptoms first appear. Some research suggests that higher testosterone levels in younger men may offer some protection against MS, potentially delaying onset.
Prevalence of Multiple Sclerosis in Men vs Women
Multiple sclerosis affects men and women differently, with a notable disparity in prevalence between the sexes:
- MS is approximately 3 times more common in women than in men
- About 25% of people with MS are men
- The female-to-male ratio of MS has increased over time
- In children with MS, the gender gap is smaller
Why is MS less common in men? Several factors may contribute to the lower prevalence of MS in males:
- Hormonal differences, particularly higher levels of testosterone
- Genetic factors linked to the X chromosome
- Differences in immune system function between males and females
- Environmental and lifestyle factors that may affect men and women differently
Despite being less common, MS can still have a significant impact on men’s lives and requires proper diagnosis and management.
Common Symptoms of Multiple Sclerosis in Men
While many MS symptoms are similar between men and women, some differences in presentation and frequency can occur:
Physical Symptoms
- Fatigue (often severe and debilitating)
- Muscle weakness and spasticity
- Balance and coordination problems
- Numbness and tingling sensations
- Vision problems (e.g., optic neuritis)
- Bladder and bowel dysfunction
Cognitive and Emotional Symptoms
- Difficulty with concentration and memory
- Depression and anxiety
- Mood swings
- Sleep disturbances
Male-Specific Symptoms
- Erectile dysfunction
- Decreased libido
- Fertility issues
Are certain MS symptoms more prevalent or severe in men? Some studies suggest that men with MS may experience more rapid disease progression and accumulate disability faster than women. Additionally, cognitive symptoms and motor function issues may be more pronounced in men with MS.
Diagnosis of Multiple Sclerosis in Men
Diagnosing MS in men follows the same general process as in women, but there are some considerations specific to male patients:
- Medical history and neurological examination
- Magnetic Resonance Imaging (MRI) scans of the brain and spinal cord
- Lumbar puncture (spinal tap) to analyze cerebrospinal fluid
- Evoked potential tests to measure nerve responses
- Blood tests to rule out other conditions
Do diagnostic criteria differ for men with MS? The fundamental diagnostic criteria, known as the McDonald Criteria, are the same for both men and women. However, healthcare providers should be aware of potential differences in symptom presentation and disease course in male patients.
Is MS often misdiagnosed in men? Due to its lower prevalence in males, MS might be overlooked or misdiagnosed in men, especially if symptoms are atypical. It’s crucial for healthcare providers to consider MS as a possibility in male patients presenting with neurological symptoms, even if they don’t fit the typical profile.
Treatment Options for Men with Multiple Sclerosis
Treatment strategies for MS in men are generally similar to those for women, but may be tailored to address male-specific concerns:
Disease-Modifying Therapies (DMTs)
- Injectable medications (e.g., interferons, glatiramer acetate)
- Oral medications (e.g., fingolimod, dimethyl fumarate)
- Infusion therapies (e.g., natalizumab, ocrelizumab)
Symptom Management
- Medications for specific symptoms (e.g., muscle relaxants, antidepressants)
- Physical therapy and exercise programs
- Occupational therapy for daily living skills
- Cognitive rehabilitation
- Treatments for sexual dysfunction and fertility issues
Lifestyle Modifications
- Stress management techniques
- Dietary adjustments
- Smoking cessation
- Regular exercise and physical activity
Are there any treatments specifically designed for men with MS? While most MS treatments are not gender-specific, some approaches may be tailored to address male-specific concerns, such as erectile dysfunction or fertility preservation. Additionally, hormone therapy involving testosterone has been explored as a potential treatment option for men with MS, although more research is needed in this area.
Impact of Multiple Sclerosis on Men’s Quality of Life
MS can significantly affect various aspects of a man’s life, including:
Career and Employment
- Challenges in maintaining full-time employment
- Need for workplace accommodations
- Potential impact on career advancement
Relationships and Family Life
- Strain on romantic partnerships
- Changes in family dynamics and roles
- Concerns about fertility and family planning
Physical Activity and Hobbies
- Limitations in sports and physical activities
- Need to adapt hobbies and leisure pursuits
- Importance of maintaining an active lifestyle within individual capabilities
Mental Health and Emotional Well-being
- Increased risk of depression and anxiety
- Challenges to self-image and masculinity
- Importance of psychological support and counseling
How can men with MS maintain a high quality of life? Developing a strong support network, staying engaged in meaningful activities, and working closely with healthcare providers to manage symptoms and disease progression are crucial. Additionally, joining support groups or connecting with other men with MS can provide valuable emotional support and practical advice.
Multiple Sclerosis and Male Fertility
MS can impact male fertility and sexual function in several ways:
- Erectile dysfunction (ED) is common in men with MS
- Decreased libido due to fatigue, depression, or medication side effects
- Ejaculatory problems, including retrograde ejaculation
- Potential effects on sperm quality and quantity
Can men with MS still father children? In most cases, MS does not directly affect a man’s ability to father children. However, sexual dysfunction and fertility issues related to MS can make conception more challenging. There are several options available for men with MS who wish to have children:
- Medications to treat erectile dysfunction
- Assisted reproductive technologies (e.g., IVF, ICSI)
- Sperm retrieval techniques for men with severe ejaculatory dysfunction
- Fertility preservation (sperm banking) before starting certain MS treatments
Is it safe for men with MS to father children? Current research suggests that there is no increased risk of birth defects or other health issues in children fathered by men with MS. However, it’s essential for men with MS to discuss family planning with their healthcare providers to address any concerns and optimize their health before conception.
Life Expectancy and Long-term Outlook for Men with Multiple Sclerosis
Understanding the long-term prognosis for men with MS is crucial for patients and their families:
- MS itself is rarely fatal, but can lead to complications that affect life expectancy
- On average, MS may reduce life expectancy by 5-10 years
- Men with MS tend to have a slightly shorter life expectancy than women with MS
- The course of MS can vary greatly between individuals
What factors influence the long-term outlook for men with MS? Several factors can affect the prognosis and life expectancy of men with MS:
- Age at onset (earlier onset may be associated with slower progression)
- Type of MS (relapsing-remitting vs. progressive forms)
- Frequency and severity of relapses
- Extent of disability accumulation
- Presence of other health conditions
- Access to healthcare and MS treatments
- Lifestyle factors (e.g., diet, exercise, stress management)
How can men with MS improve their long-term outlook? While MS is a chronic condition, there are several strategies men can employ to optimize their health and potentially improve their long-term prognosis:
- Adhering to prescribed MS treatments and follow-up care
- Maintaining a healthy lifestyle (balanced diet, regular exercise, stress reduction)
- Managing comorbid conditions effectively
- Staying engaged in regular physical and cognitive activities
- Participating in MS research and clinical trials when appropriate
By working closely with their healthcare team and taking an active role in their care, men with MS can often lead fulfilling lives and manage their condition effectively over the long term.
Emerging Research and Future Directions in MS Treatment for Men
The field of MS research is continuously evolving, with several promising areas of investigation that may benefit men with MS:
Personalized Medicine Approaches
- Genetic profiling to predict disease course and treatment response
- Biomarker identification for more precise diagnosis and monitoring
- Tailored treatment strategies based on individual patient characteristics
Novel Therapeutic Targets
- Neuroprotective and remyelinating agents
- Stem cell therapies for repair and regeneration
- Targeting of specific immune cell populations
Hormone-Based Treatments
- Investigation of testosterone supplementation in men with MS
- Exploring the role of other sex hormones in MS progression
Lifestyle and Environmental Interventions
- Dietary approaches (e.g., intermittent fasting, ketogenic diets)
- Vitamin D supplementation and sun exposure
- Exercise protocols tailored for MS patients
What are some promising areas of research specifically for men with MS? Several ongoing studies are focusing on male-specific aspects of MS:
- Investigating the protective effects of testosterone on MS progression
- Examining sex differences in immune function and their impact on MS
- Developing targeted interventions for cognitive symptoms in men with MS
- Exploring novel treatments for sexual dysfunction in male MS patients
How can men with MS participate in advancing research? Men with MS can contribute to scientific progress in several ways:
- Volunteering for clinical trials and research studies
- Participating in patient registries and databases
- Sharing their experiences through patient advocacy groups
- Supporting MS research through fundraising and awareness initiatives
By actively engaging in research efforts, men with MS can play a crucial role in advancing our understanding of the disease and developing more effective treatments for future generations.
Support and Resources for Men Living with Multiple Sclerosis
Living with MS can be challenging, but numerous resources are available to support men throughout their journey:
Educational Resources
- National Multiple Sclerosis Society
- Multiple Sclerosis Association of America
- MS Foundation
- Peer-reviewed medical journals and publications
Support Groups and Peer Connections
- Local MS support groups (in-person and virtual)
- Online forums and social media communities
- Mentorship programs connecting newly diagnosed men with experienced patients
Financial and Legal Assistance
- Disability benefits information and application support
- Financial planning resources for chronic illness
- Legal aid for workplace accommodations and rights
Mental Health Support
- Counseling and therapy services specializing in chronic illness
- Stress management and mindfulness programs
- Support for partners and family members of men with MS
How can men with MS find the most appropriate support resources? To identify the most helpful resources, men with MS can:
- Consult with their healthcare team for recommendations
- Reach out to local MS organizations for information on nearby services
- Explore online resources and virtual support options
- Connect with other men with MS through support groups or patient advocacy organizations
Are there any support resources specifically designed for men with MS? While many MS support services are gender-neutral, some organizations offer programs tailored to men’s needs:
- Men’s support groups focused on male-specific MS challenges
- Workshops addressing career concerns and workplace issues for men with MS
- Resources for managing sexual health and relationships
- Fitness and wellness programs designed for men with MS
By taking advantage of these support resources, men with MS can better navigate the challenges of living with the condition and maintain a high quality of life. Remember that seeking support is a sign of strength, not weakness, and can significantly improve overall well-being and disease management.
Who gets MS? | National Multiple Sclerosis Society
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Epidemiology of multiple sclerosis
According to the CDC, epidemiology is the branch of medicine that studies the frequency and pattern of a disease as well as the causes and risk factors in specific populations. The scientists who work in this field are called epidemiologists.
While MS is not contagious nor directly inherited, epidemiologists have identified factors involved in the distribution of MS around the world. These factors include sex, genetics, age, geography and ethnic background. Understanding what causes MS will help us find more effective ways to treat it and — ultimately — cure it, or even prevent it from occurring in the first place.
A 2019 study confirmed that nearly 1 million people are living with MS in the U.S., more than twice the previous estimate.
At what age is MS usually diagnosed?
Most people are diagnosed between the ages of 20 and 50, although MS can occur in young children and older adults.
Where is MS most common geographically?
In general, MS is more common in areas farthest from the equator. However, prevalence rates may differ significantly among groups living in the same geographic area regardless of distance from the equator.
The role of sex hormones in multiple sclerosis
The recent prevalence study shows that MS is 3 times more common in those assigned female at birth than male. This suggests that hormones may also play a significant role in determining susceptibility to MS.
Women Living With Multiple Sclerosis
Read some possible causes for the higher rate of MS in women and learn how the disease course differs in them.
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Ask an MS Expert: How MS Affects Men
Men with MS may have differences in disease progression and severity. Dr. Robert Shin talks about why that may be.
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Does ethnic background affect who gets MS?
Research has demonstrated that MS occurs in most ethnic groups, including African Americans, Asian Americans and Hispanics/Latinx in the U.S., but is most common among white people of northern European descent. Susceptibility rates vary among these groups, with recent findings suggesting that African American women have a higher than previously reported risk of developing MS.
What is the genetic risk of MS?
MS is not an inherited disease, meaning it is not a disease that is passed down from generation to generation. About 200 genes have been identified that each contribute a small amount to the overall risk of developing MS. In the general population, the risk is about 1 in 333.
What are other risk factors for MS?
Evidence shows that low vitamin D levels, smoking and obesity all play important roles in the development of MS. Many viruses and bacteria have been or are being investigated in connection with MS as well. A growing number of research findings indicate that previous infection with Epstein-Barr Virus (EBV), the virus that causes mononucleosis, contributes to the risk of developing MS.
Learn more about the possible causes of MS.
Epidemiological estimates
Although more people are being diagnosed with MS today than in the past, the reasons for this are not clear. Likely contributors include greater awareness of the disease, better access to medical care and improved diagnostic capabilities. There is no definitive evidence that the rate of MS is generally on the increase.
Related articles from Momentum Magazine
- On the Rise
- Strength in Numbers
- When Men Get MS
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MS in Men | Symptoms, Life Expectancy, and More
Age of MS onset
MS prevalence
Common MS symptoms in men
MS experiences in men
Diagnosis
FAQs
Multiple sclerosis (MS) is an autoimmune disorder in which inflammation causes damage to the nervous system. This can result in a variety of MS symptoms in patients, including muscle spasms and weakness, fatigue, depression, unusual sensations, and problems controlling the bladder and bowels.
While the disease affects everyone differently, certain factors are associated with the risk of developing MS and trends in disease course. Among other factors, there are some general differences in how MS tends to affect men compared with women.
Of note, biological sex and gender identity are separate concepts that each exist on a spectrum of experiences. For purposes of simplicity, in this article, the term “man” is used to refer to people assigned male at birth, who have one X chromosome, one Y chromosome, and a hormone profile characterized by high levels of testosterone.
At what age do men develop MS?
MS can develop at any age, but the most common age of onset is between 20 and 50.
Is MS less common in men than in women?
In general, men are less likely to develop MS than women. This difference also depends on the type of MS.
Most patients are initially diagnosed with relapsing-remitting MS (RRMS), which is characterized by periods of less severe symptoms (remission) interspersed with bouts of worsening symptoms (relapses). Relapsing MS is about three times more common in women than in men.
This difference is thought to be driven mainly by differences in sex hormones (testosterone in men, estrogen in women) that occur after puberty. Prior to the onset of puberty, rates of MS are similar regardless of sex. Rates of MS also are similar among older people later in life, when sex hormone levels decrease.
Primary progressive MS (PPMS), a rarer form of MS in which symptoms gradually worsen from disease onset, affects men and women at roughly equal rates.
Are there specific MS symptoms in men?
Each person with MS will develop a unique set of symptoms, based on the specific pattern of inflammatory nervous system damage in that individual and the affected part of the body. There are no MS symptoms that are exclusively found in men and not women, but some signs of MS are generally more common for men or women.
Men with MS are more likely to experience:
- motor problems
- loss of coordination and imbalance
- cognitive difficulties
In contrast, vision problems are more common in women with MS.
Men are more likely than women to initially develop PPMS. Additionally, among people with RRMS, men are independently associated with a shorter amount of time to onset of secondary progressive MS (SPMS). Rates of brain atrophy are generally higher in men.
Among relapsing MS patients, men tend to have worse recovery after relapses — that is, more symptoms continue to persist even in times of relative remission. In large part because of this reduced recovery, disabling symptoms tend to accumulate more quickly in men with MS, resulting in a faster progression of the disease. In PPMS, rates of disability accumulation are similar regardless of sex.
Common MS experiences in men
The manifestations of MS are unique for each individual, and being a man with MS can pose unique social and psychological challenges. The disease also can complicate a person’s sex life — most men with MS will experience erectile dysfunction at some point. Bladder problems also are common in MS patients.
Disability and masculinity
Some research has shown that disabling MS symptoms have a larger impact on the quality of life and functional ability in men than in women with MS. In other words, men with MS tend to view their own physical, psychological, and social welfare more unfavorably than women with MS who have similar scores on measures of disability.
One factor that likely contributes to these differences is that living with a chronic, disabling condition like MS can challenge men’s perception of their own identity, as the dominant cultural concept around masculinity places men in the role of “protector and provider.”
Research also suggests that men generally are less likely to seek healthcare services or mental health resources such as counseling or support groups. Nonetheless, care and support can improve clinical outcomes and make day-to-day life more enjoyable. It’s important to keep in mind that needing help is not a sign of weakness but an integral part of the human condition.
MS and sexual intimacy
In MS, damage to the nervous system can interfere with the body systems that normally control the physiological processes associated with sexual arousal. As many as 9 in 10 men with MS experience some form of sexual dysfunction.
- Erectile dysfunction — difficulty getting and/or maintaining a penile erection — is especially common; as many as 75% of men with MS experience erectile dysfunction at some point. This symptom may be managed with specific medications, including phosphodiesterase inhibitors or treatments including sildenafil (sold as Viagra, among other brand names).
- Reduced libido, decreased genital sensation, and difficulty orgasming also can occur in MS. Experimenting with novel ways to be intimate and incorporating vibrators or other toys may help with these issues.
Sexual issue | Potential management strategies |
---|---|
Erectile dysfunction | Phosphodiesterase inhibitors or treatments including sildenafil (sold as Viagra, among other brand names). |
Reduced libido, decreased genital sensation, and difficulty orgasming | Experimentation with novel ways of being intimate and incorporation of vibrators or other toys. |
In addition to the direct effects of MS, some MS symptoms may require adjustments or accommodations during sexual intimacy. For example, a tremor may make it difficult to put on a condom without assistance, while fatigue and emotional changes can cause strain in sexual and emotional relationships.
Men with MS are advised to talk about their desires and the challenges they are experiencing with both their sexual partners and their healthcare team.
Does MS diagnosis differ for men?
The formal guidelines for diagnosing MS, called the McDonald criteria, state that a diagnosis may be made if there is evidence of MS-like inflammatory damage affecting more than one part of the central nervous system at more than one point in time. There are no differences in MS diagnostic criteria or tests for men and women.
Life expectancy and prognosis of men with MS
Multiple sclerosis itself is not fatal, but it can raise the risk of health complications such as pneumonia, which may be life-limiting. Life expectancy for people with MS is about five to 10 years shorter than the general population on average, though this gap is closing over time as care for MS patients continues to improve.
The average lifespan in the general population is shorter for men than women, and this also is generally true in MS. A 2017 analysis that assessed data for more than 1,000 MS patients across 60 years in Norway found that the median lifespan was 72.2 years for men with MS, and 78.9 years for those without the disease. In women, the median lifespan was 77.2 years for those with MS and 84.6 years in the general population.
Rates of disability worsening in MS vary substantially from person to person and are influenced by MS treatments as well as the type of disease. Progressive forms of MS generally lead to a faster accumulation of disabling symptoms.
A 2015 study assessed disability progression in 15,826 MS patients across 25 countries. Among patients with relapsing disease, the average time from the onset of MS to the development of moderate disability was about eight years for men and 10 years for women. The average time from disease onset to requiring an aid to walk was 32 years in men with relapsing MS.
In the same study, rates of disability accumulation were similar for men and women with PPMS. These patients developed moderate disability within about two to three years of symptom onset on average and required an aid to walk within roughly 15 years of disease onset.
Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
BETALIFE – Parent’s Guide
Contents
- Symptoms
- Where to go?
- How is the diagnosis carried out?
- What to expect?
- Features of multiple sclerosis in children
- Education
- Family
- Friends
- How to tell a child about the diagnosis?
- 5 stages of acceptance of the disease
- Psychological assistance
- Cognitive problems. Memory and thinking
- Adolescence and multiple sclerosis
Until recently, it was believed that only adults suffer from multiple sclerosis, but recent studies show that doctors are increasingly diagnosing multiple sclerosis in children and adolescents [1]. There may be even more cases of the disease, since doctors are not always able to diagnose multiple sclerosis in children.
3 million cases of multiple sclerosis were registered in the world, 350 thousand in Europe, 450 thousand in the USA, 150 thousand in Russia. .66% of patients [2]. In Europe, pediatric multiple sclerosis accounts for up to 5% of all cases of the disease. Women get PC 1.5-2 times more often than men. At the same time, in children in the age group up to 10 years, the incidence of MS is approximately the same in both girls and boys, and only in adolescence does it significantly increase in the female population [2].
Symptoms
As in adults, the clinical manifestations of multiple sclerosis in children are diverse [3]. Often the symptoms do not allow unequivocally establishing the correct diagnosis [3]. In this regard, it is necessary to pay close attention to unusual symptoms that occur in a child, and consult a doctor in a timely manner.
It should be noted that changes in visual acuity are one of the most unstable symptoms of MS. Of the other cranial nerves (CN), the oculomotor nerves are often affected, a manifestation of which is a violation of eye abduction to the right or left.
It is important to remember that the detection of any of the above symptoms requires immediate medical attention.
Where to go?
First of all, you should contact your pediatrician. He will conduct an examination and refer you to a pediatric neurologist if necessary. The neurologist will establish an accurate diagnosis, prescribe therapy and monitor the health of the child.
How is the diagnosis carried out?
All necessary diagnostic procedures are prescribed by the attending physician and serve to confirm the final diagnosis of multiple sclerosis.
What to expect?
In childhood, at the initial stages of the disease, the relapsing course of MS predominates [9]. Cases of a primary progressive course with onset in childhood have been published, but they are isolated and diagnostically doubtful.
The disease can seriously affect the development of the child, mainly affecting his emotional and psychological state. This is especially noticeable in cases where the child has movement disorders that significantly limit his activity in the peer environment. In such a situation, the correct psychological approach to the child and the formation of the correct attitude towards the disease are extremely important. Child psychologists often come to the rescue in this [10].
Multiple sclerosis can be a significant problem for a child and family if not properly addressed.
- Children are characterized by a more acute onset of the disease than adults [4]. Primary manifestations, as a rule, are difficult to miss. Often it is a headache, nausea, vomiting, dizziness, fever, convulsions, sensory and motor disorders. This combination of symptoms usually leads to the initial diagnosis of meningoencephalitis, with which the child is hospitalized and, after MRI, the diagnosis of MS is established. Such a severe debut of multiple sclerosis does not necessarily mean a poor prognosis. With timely diagnosis and properly selected treatment, the symptoms quickly regress, and the child returns to normal life under the obligatory supervision of a pediatric neurologist [5].
- In other cases, the symptoms are not so pronounced and are not always clearly identified by the child and parents. One of these symptoms is increased fatigue [4]. Such fatigue is independent of physical or any other load and increases with high temperature or humidity. In this case, the diagnosis of multiple sclerosis requires increased attention to the child’s condition, as early as possible contact with a specialist and the mandatory implementation of all necessary diagnostic procedures.
- Another common manifestation of multiple sclerosis in children is visual impairment (optic neuritis) [6]. Visual impairment is caused by a demyelinating lesion of the optic nerve or other parts of the visual analyzer and manifests itself as a decrease in visual acuity in one eye, accompanied by pain when moving the eyeballs with a duration of disturbances of at least 24 hours and, as a rule, subsequent complete or partial restoration of vision. In such cases, parents turn to a pediatric ophthalmologist, who establishes the diagnosis after a series of special diagnostic tests.
- Movement disorders are another manifestation of multiple sclerosis in children, caused by damage to the brain pathways involving the cerebellum [5]. Parents may notice impaired gait and balance, weakness and limitation of movement in the legs, trembling in the arms, head and torso. Characteristic of the disease is a progressive increase in these disorders up to the inability to walk.
- Sensory symptoms are common [5]. Tingling, decrease or sharp increase in sensitivity. “Papers and needles,” “ice inside the leg,” “standing on broken glass,” and other unusual descriptions are characteristic of sensory disturbance in children with multiple sclerosis. Typical is the appearance of such sensations in the arm or leg, spreading over the whole body after a few days and gradually disappearing within a few weeks.
- Multiple sclerosis is characterized by Lermitte’s symptom – when the head is tilted, there is a sensation of electric current passing through the spine, sometimes spreading to the limbs [7].
- Some patients may experience urination disorders in the form of imperative (sudden and strong) urges in combination with urinary retention [4].
- In children with multiple sclerosis, convulsive conditions are often encountered, which must be differentiated from epileptic activity, impaired speech and swallowing, and hearing loss. The child may complain that his muscles twitch all over his body [4].
- An obligatory diagnostic standard for multiple sclerosis is MRI [8]. On the MRI image, foci are found, often rounded, localized in different parts of the white matter of the brain. In some cases, the introduction of a contrast agent may be necessary.
- In addition, to clarify the diagnosis, it may be necessary to study the cerebrospinal fluid, evaluate the fundus and study the indicators of evoked potentials [8].
Multiple sclerosis in children is usually benign and is manifested by periods of remissions and exacerbations.
Features of multiple sclerosis in children
- Children show the same symptoms as adults: weakness, urinary incontinence, muscle spasms, impaired sensation and numbness, convulsions, Lermitte’s syndrome. However, the child may experience seizures, which usually does not occur in adults [1-7].
- Treatment of children does not differ from the principle of therapy for adults: treatment of attacks, in order to prevent new exacerbations, as well as alleviate symptoms [3].
- Such symptoms, as fatigue, numbness or tingling, muscle weakness, depression, may not completely disappear immediately after an exacerbation [1-7, 10]. But there are many treatments available to help relieve the symptoms. For this, physiotherapy, psychological assistance, special medications are used.
- The child should be carefully monitored for any symptoms. Not all of them can be a manifestation of the disease. After all, a child with multiple sclerosis can get sick with the same diseases as other children.
Education
For some children with multiple sclerosis, school can be a real challenge. The presence of a disease can seriously interfere with education, so it is very important to support the child and help him [11].
Children constantly compare themselves with others. Thoughts “I am different, I am different” can cause complexes and low self-esteem. The psychological problems that have arisen as a result of multiple sclerosis can greatly affect academic performance and relationships with others [10].
Movement restrictions, inability to actively participate in play and physical activities may upset the child. Perhaps, teachers will have to treat it with special attention [12].
Family
Multiple sclerosis in a child affects the whole family. After all, the disease is reflected in communication, relationships with each other, in the daily routine. Learning to live with an unpredictable illness can be difficult for all family members.
Raising such a child requires more involvement of parents. Children with multiple sclerosis may be aggressive, depressed or anxious [10]. It is very important to openly discuss problems with children. Take the time to talk seriously with them about what multiple sclerosis is and how it will affect family life [13].
Friends
Many people have no idea what multiple sclerosis is and how it manifests itself. It is very important to tell the child’s friends and their parents about the diagnosis so that they understand the peculiarities of his behavior [14]. Be sure to ask your child what you can tell others about his illness and what you should not say.
How to tell a child about the diagnosis?
Telling a child about his illness can be quite difficult. It’s very important to be honest. It should be said directly that this disease is not fatal and that the child fell ill is not his fault. This is usually the first thing pediatricians say to children when they report an illness. Be aware of the child’s age, maturity, ability to understand certain information. This will determine what exactly is worth telling about the disease [15].
- Before starting a conversation, tell your child that he can always share his feelings and that you are ready to listen.
- Tell him that he will have to visit hospitals and different doctors quite often. The child must be ready for this.
- Explain to the child anything that may not be clear. Children always take an example from their parents, observe how they will behave in different situations. If you can talk about everything with the child, answer all the questions, he will feel much calmer.
5 stages of accepting the disease
From observing the reaction of patients after the announcement of their diagnosis, the American psychologist Elisabeth Kübler-Ross found that every patient, faced with a serious illness, goes through 5 stages of accepting the disease . Although the symptoms and severity of different diseases differ, patients are united by certain psychological conditions that replace each other. These are denial, anger, fear, depression and acceptance. Not everyone goes through these stages in the same order, it happens that some of them are repeated, like the course of the disease itself, when exacerbations are replaced by remissions [16].
Denial
Any change or loss in life will inevitably lead to denial [15, 16]. Someone, denying the disease, may be convinced that the disease will not harm him. The child can pretend that nothing is happening to him, ignore the recommendations of doctors and the requests of parents who are trying to help.
Anger
“Why exactly am I sick?!”, “Why exactly am I 1 out of 100,000 healthy people?!” – questions that often cause anger in the patient [15, 16]. It can be directed at someone outside or at oneself. The best way to minimize anger is to find an outlet for it. It is important to allow the child to speak out, to express their feelings. In some cases, it is better to contact a psychotherapist who will help direct aggression in the right direction. Anger and aggression are a normal condition for a patient who is going through a serious condition. It may take a long time to deal with these emotions. But sometimes some anger remains with the patient throughout the illness.
Fear
Often the cause of anger is fear, which comes after the realization of the impossibility of a complete cure. Patients understand that from now on they cannot plan their lives [15, 16]. Usually fear is increased by the fact that a person knows little about the disease, so the best way to deal with it is to study your disease. Fear also arises when a person loses faith in himself, his ability to deal with problems. Fear only exacerbates depression. This step is the most important. Try to inspire the child, create a positive environment. Hope and faith in the success of treatment can reduce the feeling of fear and get out of this state.
Depression
The feeling of grief and powerlessness before the disease brings depression into the patient’s life. At this stage, the child may withdraw into himself, avoid friends, even refuse his favorite food and activities [15,16]. Sadness can cause feelings of inferiority and frustration. Help your child survive this period, support him, show that he is not alone and you are always ready to help him.
Acceptance
Dealing with a serious illness can be a big challenge for a child. But at the same time, it brings faith in yourself and in your strength, which develops with the ability to overcome difficulties [15, 16]. Success comes in various forms: the ability to control the disease, think positively, understand your body; the success of medical treatment; progress in physiotherapy. With every small success comes the confidence that you can live fully, that life becomes important and meaningful.
The stages of accepting a disease do not always go in a certain order, fear can be replaced by anger, and depression by denial, etc. Someone may stop at one stage for a long time or return to the previous one. No matter what stage your child is in, it is important to allow him to go through this period, to experience all the feelings and emotions that have gripped him at the moment, in order to move on to the next stage. Don’t rush this process. Let everything go naturally, otherwise the acceptance of the disease will not happen. And, most importantly, be there for support.
Psychological help
Every person with multiple sclerosis sooner or later begins to feel depressed. For some, it becomes deeper and longer. If your child has lost his appetite, sleeps poorly, is sad, has lost interest in things that used to fascinate him, you must first of all draw the attention of the attending physician to this and then, possibly, seek qualified psychological help [17]. The specialist will determine the strategy of action to help the child. Highlight what could have caused this condition, perhaps it is a fear of the future, anxiety about the diagnosis, or problems at school. Talk, ask to share your fears and thoughts. Show that you support and love him.
Cognitive problems. Memory and thinking
Cognitive (cognitive) abilities are the abilities to remember and think, helping a person to distribute attention, learn and fix new information, think, imagine and solve various problems, plan and follow the necessary tasks, understand and use language, etc. e. Accordingly, each person’s cognitive abilities are different.
Multiple sclerosis can cause disturbances in the transmission of nerve impulses in various parts of the cerebral cortex. The disease often negatively affects the memory and thinking of a person. Depression, stress, fatigue can also inhibit cognitive processes [17]. Children with cognitive impairments, for example, may have difficulty remembering a fact or have difficulty switching from one activity to another. People with multiple sclerosis rarely experience problems with other types of memory, do not forget various skills (for example, cycling), and remember the past perfectly. Most often, patients with multiple sclerosis do not experience difficulties with communication and are able to perform their usual daily activities.
Keep in mind that not all children with multiple sclerosis develop these problems. To prevent cognitive impairment, try to engage with your child, solve logical problems, solve puzzles, train memory and read more [17].
There are different ways that can help your child minimize cognitive impairment [17, 18] :
If your child has difficulty remembering information, try techniques for memory improvement :
Children with multiple sclerosis may forget what you recently told them, asked them to do or go somewhere. They may simply not understand the information or immediately forget it [17, 18]. Be sure to explain everything clearly so that the child understands you. This may seem elementary and self-evident to you, but your child may need help with even simple tasks.
- Explain to your child that he can ask for help in difficult situations (to teachers, classmates, etc.).
- Help your child identify their own strengths and weaknesses so they can set goals and avoid potential setbacks. And he turned to peers and elders for help, if necessary.
- There are many books, riddles, puzzles, crosswords and other games.
- It is important that the child concentrates on only one task at a time, such as not turning on the TV while doing homework.
- Help your child learn how to properly rest and take breaks from work.
- Give him a beautiful notebook in which he will write down tasks to be completed, as well as important phone numbers, addresses, schedules, etc.
- Create a planning system for the whole family. Make discussing family plans a daily activity, such as at dinner.
- A variety of stickers to record important things that your child can use. They can be pasted, for example, on the refrigerator or the front door.
- A mobile phone and a computer can also be helpful for daily planning. Use various mobile phone applications with your child, such as notepads, reminders, to-do lists. Applications will remind you of things to do.
- Use the mnemonics , a system that helps you remember the information you need. For this, various rules, phrases, abbreviations, rhymes are used to facilitate memorization (for example: “Every Hunter Wants to Know Where the Pheasant Sits” is a phrase for remembering the colors of the rainbow).
- Use visualization . Pictures and diagrams can be good helpers. For example, tell your child how to get to the library or to the cinema, and draw a diagram of the route.
- Organize at home storage places . Create boxes and shelves for certain items so that the right items, such as scissors or paper, always lie in a certain place.
- Try to develop habits and organize your daily routine in such a way that your child does not have to memorize too much.
Adolescence and multiple sclerosis
As a child gets older, they may need more information about their diagnosis. It is important for a child to understand his illness, learn to control it.
Upon learning of multiple sclerosis, a teenager may react quite unexpectedly: run away from home, withdraw into himself and
As the child gets older, he probably needs more information about his diagnosis. It is important for a child to understand his illness, learn to control it. Upon learning about multiple sclerosis, a teenager may react completely unexpectedly: run away from home, withdraw into himself or pretend that nothing happened. Although sometimes it is difficult to separate the typical unpredictable behavior of a teenager from the reaction to the acceptance of the disease [15, 16]. Listen carefully to what your child is saying. Be sensitive in order to catch the possible development of depression or notice a violation of cognitive abilities (problems with memory, concentration of attention), to come to his aid in time [10, 17, 18].
Try not to pressure your child or try to control their feelings and reactions. Each person is individual. Perhaps the teenager will start screaming, crying, or not wanting to talk at all. It is normal for teenagers to feel guilty, to wonder what they did to deserve this disease. In some cases, the child may experience relief after learning the cause of the unusual symptoms that bothered him.
It may take a teenager some time to realize and accept the illness [15, 16]. Don’t pressure him. Say that you are always ready to help him and talk.
Multiple sclerosis can completely change the life of a child and the whole family. This is a serious illness that requires a certain way of life, a special attitude, special therapy. The manifestations of multiple sclerosis are different for each person, regardless of age. Therefore, it is impossible to predict how the disease will develop in your child.
It is natural for a parent to be concerned about a child’s future, to worry about how multiple sclerosis might affect his life. However, many children with multiple sclerosis live full lives, successfully graduate from school and go to university, after which they find good jobs and start a family.
one diagnosis is not enough » Medvestnik
At the end of October, the annual conference on multiple sclerosis ECTRIMS took place in Paris. Experts discussed a number of issues related to aspects of this disease: diagnosis, therapy, drugs that change the course of MS (AMD), etc.
The day before, at a panel discussion with the participation of patients, attending physicians and representatives of patient communities, a correspondent of the Medvestnik.ru portal learned what problems those who live with MS experience and how people in different countries learn to diagnose and treat this disease.
Frightening unknown
Multiple sclerosis usually occurs in young and middle age (18-40 years) and affects 30-70 people per 100,000 population in different countries. It is an autoimmune disease because it is caused by a rebellion of certain immune cells against the body. As a result, the myelin sheath of the nerve fibers of the brain and spinal cord is destroyed, which often leads to disability.
The symptoms of MS usually manifest as impaired motor function. However, the patients themselves are not so much afraid of disability as the consequences of this insidious chronic and progressive disease, invisible to others: cognitive impairment, bladder problems, fatigue, depression. 9 told about it0101 Shoshana P. (Shoshana P.) from Brighton (England), who was diagnosed at the age of 28 and has been living with him for 10 years.
“The worst thing about this disease is that it is impossible to predict what other complications may happen in the future,” confirmed her words Charlotte T. (Charlotte T.) from Paris, who has been struggling with multiple sclerosis for 20 years. She received her medical degree from the University of Nancy and found herself as a medical journalist, sharing her experience of living with MS with other patients, helping them cope with the problems associated with the disease.
Similar work is being done by George Pepper from Leeds (England), co-founder of the social network for patients with MS Shift.ms (from English – “change multiple sclerosis”). He also admitted that for 13 years, since he was diagnosed, he does not know what a normal life is.
Look at the root
Despite the experience accumulated by neurologists as a result of monitoring patients with MS, the mechanisms of the development of the disease are still not well understood. “This disease is unpredictable, difficult to diagnose and even more difficult to treat,” said Dr. 9, director of medical research at the MS Clinic in Central Texas (USA). 0101 Lori Meyer (Lori Mayer). According to her, it is not uncommon for a patient’s tests and MRI indicators to be stable, but he himself speaks of the progression of the disease. “Everyone has their own symptoms, and doctors should be very careful: carefully study the tomographic images of the affected areas, look for relapses. We need to find out what we can do to avoid disability,” she stressed.
Professor of Neurology and Medical Director of the Center for Rehabilitation and MS in Overpelt (Belgium) Bart Van Wijmeersch confirmed that the disabling factors in MS are very difficult to recognize. And the patients themselves, who must take all the symptoms seriously, constantly monitor their illness, and control it, can help the doctor not to miss them.
The doctor and the patient are one team, representatives of patient communities and doctors emphasize, noting that compliance in MS is extremely important. According to George Pepper, in order to achieve the maximum effect in treatment, the patient must acknowledge the presence of the disease and speak frankly to the doctor about his symptoms in order to help make the most accurate selection of PMTSD.
The perfect balance
Indeed, the work of a neurologist with an MS patient does not end with a single prescription of drugs. The doctor must constantly monitor the patient, monitor his symptoms and, if necessary, adjust the treatment. Since there is an inevitable dilemma here: strong PMTSD can cause adverse events, and weak ones can not achieve the goal.
Until now, not a single case of complete recovery from multiple sclerosis is known: changes in the patient’s nervous system increase over time, and with them the symptoms. However, with the help of modern DMT, it is possible to slow down the accumulation of damage in the brain and spinal cord, reduce the frequency and severity of exacerbations, delay the onset of disability, and help a person retain his ability to work and self-service for as long as possible. To do this, it is better to start treatment at an early stage, while the disease has not yet led to severe disorders. But even if a person has been sick for a long time, therapy can be beneficial.
New drugs for MS appear regularly, but the understanding of how to treat, what should be the degree of drug effect on the patient’s body is constantly changing, said Professor Van Wijmeersch: “If this is a small fire, we risk using strong means to flood the house, which we extinguish. At the same time, according to him, clinical studies have convinced conservative neurologists who opposed aggressive drug therapy, according to the data obtained, can slow down brain atrophy in MS patients to the level noted in the process of natural aging. “I have many patients who say they only remember MS when they see me. They work in different industries and lead full lives,” the professor added.
Own track
The main problem of patients in Russia is the late start of drug therapy. The task of a neurologist is to recognize MS at an early stage and refer the patient to a specialized center for multiple sclerosis. Such centers, or at least offices, exist today in every subject of the Russian Federation. However, the number and qualifications of specialists working in them vary greatly. If, for example, in such a center in Moscow 5-10 specialists can work, who are able to establish the final diagnosis and prescribe the correct treatment, then in other regions it can be one office with one doctor over a vast territory. And even if a neurologist in a district hospital suspects a patient of MS and refers him to a specialist, it is not certain that the patient will get there in a timely manner.
The Russian registry contains 82,700 patients with MS, i.e., there are 56 patients with multiple sclerosis per 100,000 population. Although, according to experts, there should be about 100-150 thousand such patients.
There is also a problem with adherence to therapy. In order for first-line DMTs to be effective, they must be used regularly, as prescribed by the attending physician. It often happens that patients stop therapy on their own if they begin to experience discomfort when using certain treatments, which leads to new exacerbations and a worse prognosis.
In Russia, drugs for the treatment of MS are included in the Seven High-Cost Nosologies program and 98% of patients receive them at the expense of the budget. However, the four INNs on the list are clearly not enough to select effective treatment for patients with varying degrees and patterns of multiple sclerosis, experts say.
There are two approaches to the treatment of patients with MS: escalation, when treatment is started with first-line drugs and, if they are ineffective, they switch to second-line drugs, and induction, when the disease is active enough, it is better to immediately begin treatment with drugs to achieve remission second line. In Russia, there is a clear principle of escalation, and the Seven High Cost Nosologies program includes only one drug for the treatment of second-line MS.
In addition, although the drugs available today may have different mechanisms of action, not all of them will be equally effective for different patients. Over time, immunomodulatory DMTs become more and more targeted, which makes it possible to achieve a significantly longer relapse-free period compared to standard interferon therapy and even return some lost functions to patients. Therefore, the task of health authorities is to replenish the arsenal of neurologists in a timely manner with the most effective DMTs. Moreover, pharmaceutical companies are interested in this. For example, Sanofi recently proposed a risk-sharing plan to the state: the budget pays for the treatment of patients with MS only if a positive effect of therapy is achieved. The project is under discussion.
Regarding the side effects most patients experience with PMTSD because the drugs affect the immune system, according to Anton Shalisko the heavy ones can be controlled. “The use of drugs can be associated with the development of manageable adverse events, and more and more pharmaceutical companies are offering risk management plans (RMPs).