What is the average age of ms diagnosis. Understanding the Average Age of MS Diagnosis: Insights and Statistics
What is the typical age range for Multiple Sclerosis diagnosis. How does age affect MS symptoms and progression. When is MS considered late-onset. What are the unique challenges of pediatric MS.
The Prevalence of Multiple Sclerosis Across Age Groups
Multiple Sclerosis (MS) is a complex neurological condition that can affect individuals at various stages of life. While the disease can manifest at any age, certain patterns emerge when examining the average age of diagnosis. Understanding these trends is crucial for both patients and healthcare providers in managing the condition effectively.
The most common age range for MS diagnosis falls between 20 and 50 years old. Many health experts estimate the average age of diagnosis to be around 34. However, it’s important to note that MS can develop outside of this range, with cases reported in both children and older adults.
Key Statistics on MS Diagnosis Age
- Approximately 1 million people in the United States are living with MS
- 3-5% of MS cases are diagnosed in individuals under 16 years old
- 80% of MS cases diagnosed between ages 20-40 are relapsing-remitting MS (RRMS)
- Late-onset MS (LOMS) is diagnosed at age 50 or later
- Very late-onset MS, diagnosed after age 60, accounts for only 1% of cases
Pediatric MS: Challenges and Characteristics
Pediatric MS, also known as pediatric-onset MS (POMS), refers to cases diagnosed in children and adolescents under 18. This subset of MS presents unique challenges and characteristics that distinguish it from adult-onset cases.
Gender Differences in Pediatric MS
Interestingly, the gender ratio in pediatric MS varies depending on the age of onset:
- For children under 12: The female-to-male ratio is 1.2-to-1
- For children over 12: The ratio increases to 2.8 females for every male diagnosed
This shift in gender prevalence as children age suggests hormonal factors may play a role in MS development.
Unique Features of Pediatric MS
Children with MS often experience the disease differently compared to adults:
- Higher relapse frequency: In the first six years of POMS, children may experience relapses 2-3 times more frequently than adults with early MS
- Faster recovery: Children tend to bounce back from relapses more quickly than adults
- Slower disability progression: The rate at which disabilities develop is generally slower in pediatric cases
These differences highlight the importance of tailored approaches to managing pediatric MS.
Adult-Onset MS: The Most Common Scenario
Adult-onset MS, particularly between ages 20-50, represents the majority of MS diagnoses. This period coincides with significant life events such as career development, family planning, and personal growth, making the impact of an MS diagnosis particularly challenging.
Triggers for Adult MS Diagnosis
Many adults report that their MS symptoms become more noticeable or frequent during periods of high stress or increased life demands. This exacerbation of symptoms often leads to seeking medical attention and subsequent diagnosis.
A MyMSTeam member shared their experience: “I kept dropping things when I made dinner, and my balance was off while walking. During that time, I was under a lot of stress at home and work. I made an appointment with my primary doctor, who recommended an MRI. The results showed a bunch of lesions in my brain and spinal cord.”
Types of MS in Adults
The most common type of MS diagnosed in adults aged 20-40 is relapsing-remitting MS (RRMS), accounting for about 80% of cases. As individuals age, many with RRMS transition to secondary progressive MS. However, it’s worth noting that approximately 30% of people continue to have RRMS as they get older.
Late-Onset MS: Diagnosis After 50
Late-onset MS (LOMS) refers to cases diagnosed at age 50 or later. This subset of MS presents its own set of challenges and characteristics that differ from earlier-onset cases.
Prevalence and Demographics of LOMS
- LOMS accounts for 0.6% to 12% of total MS cases
- The average age of LOMS onset ranges from 53 to 67
- Very late-onset MS (diagnosed after 60) represents only 1% of all MS cases
- Unlike adult MS, LOMS is more common in men
Unique Challenges of LOMS
Individuals diagnosed with LOMS often face additional complications:
- Comorbidities: Other health conditions may coexist, complicating treatment
- Cognitive impairment: Issues with memory, attention, and decision-making are often more pronounced
- Sensory and motor dysfunction: Vision problems and motor difficulties may be more severe
Despite these challenges, advances in disease-modifying therapies (DMTs) have improved outcomes for people with LOMS, potentially slowing disease progression and increasing life expectancy.
Factors Influencing MS Onset and Diagnosis
While the exact cause of MS remains unknown, researchers have identified several factors that may influence the onset and diagnosis of the condition:
- Biological sex: MS is more common in women, especially in adult-onset cases
- Environmental factors: Vitamin D levels, exposure to certain viruses, and smoking may play a role
- Geographical location: MS is more prevalent in areas farther from the equator
- Race and ethnicity: Some ethnic groups have a higher risk of developing MS
Understanding these risk factors can help healthcare providers identify individuals who may be at higher risk for MS and potentially lead to earlier diagnosis and treatment.
The Impact of Age on MS Symptoms and Progression
The age at which MS is diagnosed can significantly influence the course of the disease and the challenges patients face. Let’s explore how MS manifests differently across various age groups.
Pediatric MS Symptoms and Progression
Children with MS often experience:
- More frequent relapses in the early stages of the disease
- Quicker recovery from relapses compared to adults
- Slower accumulation of physical disabilities
- Potential impact on cognitive development and academic performance
It’s crucial for parents and healthcare providers to be aware of these unique aspects of pediatric MS to ensure appropriate support and management strategies.
Adult-Onset MS Characteristics
Adults diagnosed with MS typically experience:
- A wider range of symptoms affecting various parts of the nervous system
- Potential impact on career and family planning
- Gradual accumulation of disabilities over time
- Higher likelihood of transitioning from RRMS to secondary progressive MS with age
Late-Onset MS Considerations
Individuals diagnosed with MS later in life may face:
- More pronounced cognitive impairment
- Increased likelihood of motor dysfunction and mobility issues
- Challenges in differentiating MS symptoms from age-related changes
- Potential complications due to pre-existing health conditions
Diagnostic Challenges Across Different Age Groups
Diagnosing MS can be complex, and the challenges vary depending on the age of onset. Understanding these differences is crucial for accurate and timely diagnosis.
Pediatric MS Diagnostic Challenges
Diagnosing MS in children can be particularly challenging due to:
- Similarity of symptoms to other childhood neurological conditions
- Limited awareness of pediatric MS among healthcare providers
- Difficulty in obtaining accurate medical histories from young patients
- Potential for misdiagnosis or delayed diagnosis
Early recognition of pediatric MS symptoms is crucial for prompt intervention and management.
Adult MS Diagnostic Considerations
While adult-onset MS is more commonly recognized, challenges still exist:
- Varied and sometimes subtle initial symptoms
- Potential confusion with other neurological or autoimmune conditions
- Need for comprehensive testing, including MRI and lumbar puncture
- Importance of ruling out other possible causes of symptoms
Late-Onset MS Diagnostic Hurdles
Diagnosing MS in older adults presents unique challenges:
- Overlap of symptoms with age-related conditions
- Increased likelihood of comorbidities complicating diagnosis
- Potential for atypical presentation of MS symptoms
- Need for careful differentiation from other neurodegenerative conditions
The Role of Age in MS Treatment and Management
The age at which MS is diagnosed can significantly influence treatment approaches and management strategies. Healthcare providers must tailor their approach based on the patient’s age and individual circumstances.
Pediatric MS Treatment Considerations
When treating children with MS, healthcare providers must consider:
- The impact of medications on growth and development
- The need for family-centered care and support
- Strategies to minimize disruption to education and social development
- Long-term planning for transition to adult care
Adult MS Management Strategies
For adults with MS, treatment often focuses on:
- Disease-modifying therapies to reduce relapse frequency and slow progression
- Symptom management to improve quality of life
- Rehabilitation services to maintain function and independence
- Support for career and family planning
Late-Onset MS Treatment Approaches
Managing MS in older adults requires consideration of:
- Potential drug interactions with medications for other health conditions
- Balancing aggressive treatment with quality of life considerations
- Focusing on maintaining cognitive function and mobility
- Addressing age-related health concerns alongside MS management
Regardless of the age of onset, a personalized approach to MS treatment is essential for optimal outcomes.
The Importance of Early Diagnosis and Treatment
Regardless of the age at which MS develops, early diagnosis and treatment are crucial for managing the disease effectively. Research has shown that prompt intervention can significantly impact the long-term prognosis for individuals with MS.
Benefits of Early MS Diagnosis
- Opportunity to start disease-modifying therapies earlier
- Potential to slow disease progression and reduce disability accumulation
- Improved management of symptoms and quality of life
- Better long-term outcomes and prognosis
Challenges in Achieving Early Diagnosis
Despite the benefits, early diagnosis of MS can be challenging due to:
- Variability in initial symptoms
- Similarity to other neurological conditions
- Lack of a single definitive diagnostic test
- Potential delays in seeking medical attention for mild or intermittent symptoms
Increasing awareness of MS symptoms and risk factors among both the public and healthcare providers is crucial for promoting earlier diagnosis and intervention.
Living with MS: Age-Specific Considerations
The experience of living with MS can vary significantly depending on the age of onset. Understanding these differences can help individuals and their support networks better navigate the challenges associated with MS.
Pediatric MS: Growing Up with the Condition
Children and adolescents with MS face unique challenges:
- Balancing medical needs with academic and social development
- Coping with the emotional impact of a chronic illness at a young age
- Navigating the transition to adult care and independence
- Planning for the future with consideration of MS-related limitations
Adult-Onset MS: Adapting to Life Changes
Adults diagnosed with MS often need to:
- Adjust career plans and workplace accommodations
- Navigate relationships and family planning decisions
- Manage the emotional impact of diagnosis during prime years
- Balance treatment regimens with daily responsibilities
Late-Onset MS: Facing Additional Challenges
Older adults with MS may need to:
- Differentiate MS symptoms from age-related changes
- Manage multiple health conditions simultaneously
- Adapt to changing physical abilities and potential loss of independence
- Navigate healthcare systems and insurance coverage for complex care needs
Regardless of age, support from healthcare providers, family, and peer networks is crucial for individuals living with MS. Organizations like MyMSTeam provide valuable platforms for connecting with others who understand the unique challenges of living with MS at different life stages.
The Future of MS Diagnosis and Treatment
As our understanding of Multiple Sclerosis continues to evolve, so do the approaches to diagnosis and treatment. Ongoing research and technological advancements are paving the way for more personalized and effective MS management strategies across all age groups.
Emerging Diagnostic Tools
New technologies are being developed to improve MS diagnosis:
- Advanced imaging techniques for earlier detection of brain and spinal cord lesions
- Biomarker tests to identify MS subtypes and predict disease progression
- Artificial intelligence algorithms to assist in interpreting diagnostic data
- Wearable devices for continuous monitoring of neurological function
Advancements in Treatment Options
The landscape of MS treatment is constantly evolving:
- Development of more targeted and effective disease-modifying therapies
- Exploration of regenerative therapies to repair damaged myelin
- Personalized treatment approaches based on genetic and biomarker profiles
- Improved symptom management strategies for better quality of life
Age-Specific Research Initiatives
Researchers are increasingly focusing on age-specific aspects of MS:
- Studies on the long-term outcomes of pediatric-onset MS
- Investigation of factors influencing MS progression in different age groups
- Research on managing MS alongside age-related health conditions
- Exploration of neuroprotective strategies for older adults with MS
These advancements hold promise for improving outcomes and quality of life for individuals with MS across all age groups. As research progresses, it’s likely that our understanding of the average age of MS diagnosis and its implications will continue to evolve, leading to more refined and effective approaches to MS care.
What Is the Average Age for a Multiple Sclerosis Diagnosis?
Connect with others living with multiple sclerosis
sign up
Resources
MS Information
Diagnosis and Testing
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Anastasia Climan, RDN, CDN
A person can develop multiple sclerosis (MS) at any age, but the condition is most often diagnosed in adults ages 20 to 50. Some health care experts estimate the average age of diagnosis is 34. Regardless of age group, however, everyone faces unique challenges on the path to diagnosis.
Although scientists have yet to discover a clear cause of MS, they’ve identified risk factors including biological sex, environmental factors, geographical location, and race and ethnicity. Currently, there are about one million people living with MS in the United States.
Here’s what members of MyMSTeam have shared and what the experts say about diagnosis during different stages of life.
Childhood MS Prevalence and Symptoms
Scientists estimate that 3 percent to 5 percent of MS cases develop in people under the age of 16. MS in children and adolescents under 18 is referred to as pediatric MS, or pediatric-onset MS (POMS). In children under 12, the female to male ratio for the incidence of an MS diagnosis is 1.2-to-1. For children over the age of 12, the ratio difference is higher, at 2.8 females per every male diagnosed.
MS affects children differently from adults in some key ways. During the first six years of POMS, children experience relapses (return of symptoms) two to three times more frequently than adults with early MS, according to the National Multiple Sclerosis Society. However, children also tend to recover more quickly and develop disabilities at a slower rate than adults.
Sometimes adults with MS recall experiencing unusual symptoms in their early years which they hadn’t realized resulted from having the condition. Teenagers may have mild symptoms of MS that fly under the radar, and they end up going undiagnosed until adulthood.
Such was the case for one MyMSTeam member, who said, “It took 19 long years to diagnose my MS. I was 16 (1976) when it started. My relapses were so far apart in the beginning, but as the years went by, my relapses became closer together, and more symptoms cropped up. The year my son was born (1990) was when some of the worse symptoms started, and doctors were able to rule out other illnesses. I was diagnosed in 1995.”
Diagnosis of MS in Adulthood
People who experience unusual or unexplained symptoms as teenagers may notice that those symptoms are worse or more frequent in adulthood, particularly when life gets busy or stressful. These worsening symptoms can sometimes be the trigger that leads to an MS diagnosis.
“I kept dropping things when I made dinner, and my balance was off while walking,” one MyMSTeam member wrote. “During that time, I was under a lot of stress at home and work. I made an appointment with my primary doctor, who recommended an MRI. The results showed a bunch of lesions in my brain and spinal cord.”
MS is considered the most common cause of nontraumatic neurological disability in adults. When it comes to types of MS and age, relapsing-remitting MS (RRMS) makes up 80 percent of MS cases for people aged 20 to 40. Most people with adult-onset MS develop secondary progressive MS during the disease course as they age, but 30 percent continue to have RRMS while they get older.
Getting Diagnosed With MS Later in Life
An MS diagnosis at age 50 or later is considered late-onset MS (LOMS). The average age of LOMS onset is between 53 and 67. Diagnosis after age 60 is considered very late-onset and accounts for only 1 percent of MS cases.
Like pediatric MS, LOMS is rare, representing between 0. 6 percent and 12 percent of total MS cases. Although adult MS affects three times more women than men, LOMS is more common in men.
People diagnosed with MS at a later age of onset may have other conditions (called comorbidities) that complicate MS treatment. For example, cognitive impairment — such as trouble with memory, attention span, or decision-making — is often more pronounced. So, too, are vision problems, sensory disturbances, and motor dysfunction.
Fortunately, advances in disease-modifying therapies (DMTs) have helped slow disease progression and increase the life expectancy for people with MS. Talk to your neurologist about which treatments might work for you to potentially slow the progression of MS.
Talk With Others Who Understand
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 191,000 members come together to ask questions, give advice, and share their experiences with others who understand life with multiple sclerosis.
If you have MS, when did you first begin to notice symptoms of multiple sclerosis? How long did it take to get an accurate diagnosis? Share your story in the comments below, or start a conversation by posting in the Activities feed.
References
- Who Gets Multiple Sclerosis? Epidemiology of MS — National Multiple Sclerosis Society
- Pediatric MS — National Multiple Sclerosis Society
- Epidemiology of Pediatric-Onset Multiple Sclerosis: A Systematic Review of the Literature — Journal of Child Neurology
- Multiple Sclerosis in People Over Age 55 — Practical Neurology
- Late-Onset MS: Disease Course and Safety-Efficacy of DMTS — Frontiers in Neurobiology
- MS Diagnosis: The Full Guide — Overcoming MS
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.
Related articles
MS Prognosis: Multiple Sclerosis Life Expectancy
Lea este artículo en españolIt’s not something anyone wants to think about, but when you get a di…
MS Prognosis: Multiple Sclerosis Life Expectancy
Lea este artículo en españolIt’s not something anyone wants to think about, but when you get a di…
read article >
What Are the Functions of Antibodies? Their Role in Immunity
You’ve probably heard of antibodies before — whether in the news about COVID-19 vaccines, as auto…
What Are the Functions of Antibodies? Their Role in Immunity
You’ve probably heard of antibodies before — whether in the news about COVID-19 vaccines, as auto…
read article >
Multiple Sclerosis – An Overview
Multiple sclerosis (MS) is a chronic disease of the central nervous system (CNS), which includes …
Multiple Sclerosis – An Overview
Multiple sclerosis (MS) is a chronic disease of the central nervous system (CNS), which includes . ..
read article >
Does Epstein-Barr Influence the Course of MS?
According to the latest research, the Epstein-Barr virus (EBV) may be the leading cause of multip…
Does Epstein-Barr Influence the Course of MS?
According to the latest research, the Epstein-Barr virus (EBV) may be the leading cause of multip…
read article >
Multiple Sclerosis Types
Multiple sclerosis (MS) manifests in different patterns depending on how it first appears and the…
Multiple Sclerosis Types
Multiple sclerosis (MS) manifests in different patterns depending on how it first appears and the…
read article >
Quiz: Do You Know These Key Facts About MS?
If you or a loved one are living with multiple sclerosis (MS), you’ve likely studied a lot of inf…
Quiz: Do You Know These Key Facts About MS?
If you or a loved one are living with multiple sclerosis (MS), you’ve likely studied a lot of inf. ..
read article >
Recent articles
Swallowing and Speech Problems: 8 Ways Speech Therapy for MS Can Help
If you have multiple sclerosis (MS), you may have found yourself struggling to find the right wor…
Swallowing and Speech Problems: 8 Ways Speech Therapy for MS Can Help
If you have multiple sclerosis (MS), you may have found yourself struggling to find the right wor…
read article >
Pseudobulbar Affect and MS: Uncontrollable Laughter, Crying, and More
Multiple sclerosis (MS) can cause a wide variety of symptoms — some of which you may be expecting…
Pseudobulbar Affect and MS: Uncontrollable Laughter, Crying, and More
Multiple sclerosis (MS) can cause a wide variety of symptoms — some of which you may be expecting…
read article >
Topical Treatments To Relieve MS Pain: What Works?
Peppermint and chili peppers add flavor to your favorite foods, but did you know that they’re als. ..
Topical Treatments To Relieve MS Pain: What Works?
Peppermint and chili peppers add flavor to your favorite foods, but did you know that they’re als…
read article >
Is It MS or Stiff Person Syndrome? 9 Ways To Tell the Difference
Multiple sclerosis (MS) and stiff-person syndrome (SPS) are both autoimmune diseases affecting th…
Is It MS or Stiff Person Syndrome? 9 Ways To Tell the Difference
Multiple sclerosis (MS) and stiff-person syndrome (SPS) are both autoimmune diseases affecting th…
read article >
Is It Safe for Older People With MS To Stop Taking a DMT?
With age comes wisdom, and if you’re lucky, it may also come with fewer multiple sclerosis (MS) r…
Is It Safe for Older People With MS To Stop Taking a DMT?
With age comes wisdom, and if you’re lucky, it may also come with fewer multiple sclerosis (MS) r…
read article >
8 Doctors Who Treat MS: Which Specialist Handles Which Problem?
When it comes to multiple sclerosis (MS), having the right doctors on your side is essential. Wit…
8 Doctors Who Treat MS: Which Specialist Handles Which Problem?
When it comes to multiple sclerosis (MS), having the right doctors on your side is essential. Wit…
read article >
Clinical and laboratory parameters by age for patients diagnosed with multiple sclerosis between 2000 and 2015
. 2021;55(4):387-393.
doi: 10.5603/PJNNS.a2021.0055.
Epub 2021 Aug 6.
Inga Małecka
1
, Joanna Przybek-Skrzypecka
2
, Katarzyna Kurowska
1
, Dagmara Mirowska-Guzel
3
, Anna Członkowska
4
Affiliations
Affiliations
- 1 2nd Department of Neurology, Institute of Psychiatry and Neurology, Sobieskiego 9, 02-957 Warsaw, Poland.
- 2 Department of Ophthalmology, Medical University of Warsaw, Sierakowskiego 13, 03-709 Warsaw, Poland.
- 3 Centre for Preclinical Research and Technology (CePT), Department of Experimental and Clinical Pharmacology, Medical University of Warsaw, Krakowskie Przedmieście 26/28, 00-927 Warsaw, Poland.
- 4 2nd Department of Neurology, Institute of Psychiatry and Neurology, Sobieskiego 9, 02-957 Warsaw, Poland. [email protected].
PMID:
34355789
DOI:
10.5603/PJNNS.a2021.0055
Free article
Inga Małecka et al.
Neurol Neurochir Pol.
2021.
Free article
. 2021;55(4):387-393.
doi: 10.5603/PJNNS.a2021.0055.
Epub 2021 Aug 6.
Authors
Inga Małecka
1
, Joanna Przybek-Skrzypecka
2
, Katarzyna Kurowska
1
, Dagmara Mirowska-Guzel
3
, Anna Członkowska
4
Affiliations
- 1 2nd Department of Neurology, Institute of Psychiatry and Neurology, Sobieskiego 9, 02-957 Warsaw, Poland.
- 2 Department of Ophthalmology, Medical University of Warsaw, Sierakowskiego 13, 03-709 Warsaw, Poland.
- 3 Centre for Preclinical Research and Technology (CePT), Department of Experimental and Clinical Pharmacology, Medical University of Warsaw, Krakowskie Przedmieście 26/28, 00-927 Warsaw, Poland.
- 4 2nd Department of Neurology, Institute of Psychiatry and Neurology, Sobieskiego 9, 02-957 Warsaw, Poland. [email protected].
PMID:
34355789
DOI:
10.5603/PJNNS.a2021.0055
Abstract
Aim of the study:
To compare the demographic, clinical and laboratory characteristics of patients with multiple sclerosis (MS) analysed based on the age at which they were diagnosed.
Clinical rationale for the study:
Most cases of MS are diagnosed between the ages of 20 and 40 years, but the clinical characteristics of patients with MS over this age range have rarely been studied.
Material and methods:
182 patients diagnosed with MS between 2000 and 2015 were divided into four groups by age at diagnosis: < 30 years (n = 62), 30-39 years (n = 54), 40-49 years (n = 27), and ≥ 50 years (n = 39). The demographic, clinical and laboratory features of each age group were investigated and between-groups comparisons analysed.
Results:
There were no significant differences in the female-to-male ratio between groups, which was close to 3:1 in every group (p = 0.98). Motor symptoms were more common as the first manifestation of MS with increasing age (< 30: 19. 3%; 30-39: 37.0%; 40-49: 44.4%; ≥ 50: 61.5%). Visual and sensory symptoms were responsible for nearly half of first manifestations in patients < 30 to 49, but affected a significantly lower proportion of patients in the oldest group (p = 0.01). Median (interquartile range [IQR]) Expanded Disability Status Scale at diagnosis was higher with advancing age (2 [1.5-3], 2.25 [1.5-3.5], 3 [2-3.5], and 3.5 [3-5]; p < 0.01). There was also a higher proportion of patients with progressive forms of the disease with age, especially primary progressive MS (0.0%, 3.7%, 14.8%, and 51.3%; p < 0.01). The median (IQR) time needed to confirm the diagnosis of MS became significantly longer as age increased (7 [2-25], 9 [2-32], 12 [6-58], and 26 [12-60] months; p < 0.01). In laboratory tests, significant differences were found only in the rate of post-contrast enhancement by magnetic resonance imaging, which was lower in the older age groups (63.2%, 50.0%, 31.6%, and 30.0%; p < 0.01).
Conclusions and clinical implications:
Our study indicates significant differences in the demographic and clinical picture of MS depending on the age of the patient at diagnosis. Diagnostic delay in older patients is a common problem, and this study shows the features of later forms of MS to help inform neurologists and improve time to diagnosis.
Keywords:
Multiple sclerosis; age at diagnosis; clinical differences; time from first symptoms to diagnosis.
Similar articles
Clinical characteristics of patients with late-onset multiple sclerosis.
Kis B, Rumberg B, Berlit P.
Kis B, et al.
J Neurol. 2008 May;255(5):697-702. doi: 10.1007/s00415-008-0778-x. Epub 2008 Feb 19.
J Neurol. 2008.PMID: 18283394
A comprehensive assessment of patient experience and disease-related awareness in multiple sclerosis: A questionnaire-based nation-wide survey in Turkey.
Demir S, Tutuncu M, Uzunkopru C, Gumus H, Sen S, Gunduz T, Dogan IG, Cinar BP, Incirli SU, Tutuncu M, Mavi K, Yuksel S, Togrol RE, Kocaman AS, Siva A.
Demir S, et al.
Mult Scler Relat Disord. 2021 Jul;52:103005. doi: 10.1016/j.msard.2021.103005. Epub 2021 May 7.
Mult Scler Relat Disord. 2021.PMID: 34000682
Factors driving delayed time to multiple sclerosis diagnosis: Results from a population-based study.
Patti F, Chisari CG, Arena S, Toscano S, Finocchiaro C, Fermo SL, Judica ML, Maimone D.
Patti F, et al.
Mult Scler Relat Disord. 2022 Jan;57:103361. doi: 10.1016/j.msard.2021.103361. Epub 2021 Nov 1.
Mult Scler Relat Disord. 2022.PMID: 35158432
Clinical Features of Late-Onset Multiple Sclerosis: a Systematic Review and Meta-analysis.
Naseri A, Nasiri E, Sahraian MA, Daneshvar S, Talebi M.
Naseri A, et al.
Mult Scler Relat Disord. 2021 May;50:102816. doi: 10.1016/j.msard.2021.102816. Epub 2021 Feb 4.
Mult Scler Relat Disord. 2021.PMID: 33571792
Review.
The diagnosis of multiple sclerosis and the various related demyelinating syndromes: a critical review.
Karussis D.
Karussis D.
J Autoimmun. 2014 Feb-Mar;48-49:134-42. doi: 10.1016/j.jaut.2014.01.022. Epub 2014 Feb 10.
J Autoimmun. 2014.PMID: 24524923
Review.
See all similar articles
Cited by
Multiple Sclerosis: Inflammatory and Neuroglial Aspects.
Papiri G, D’Andreamatteo G, Cacchiò G, Alia S, Silvestrini M, Paci C, Luzzi S, Vignini A.
Papiri G, et al.
Curr Issues Mol Biol. 2023 Feb 8;45(2):1443-1470. doi: 10.3390/cimb45020094.
Curr Issues Mol Biol. 2023.PMID: 36826039
Free PMC article.Review.
MeSH terms
What is secondary progressive multiple sclerosis and how to resist the disease? However, as soon as they began to pay close attention to it, it turned out that the disease is quite common: there are about 2.5 million such patients in the world, and at least 150 thousand in Russia.
This disease is associated with an autoimmune-inflammatory lesion of the central nervous system: one’s own immunity literally begins to attack the nervous tissue of the body, replacing it with a connective one. First of all, the fibers of the brain and spinal cord suffer. Why MS develops is still unknown to science, but various viral diseases (primarily the Epstein-Barr virus), vitamin D deficiency, smoking, environmental pollution, changes in the intestinal microflora and others are distinguished among the risk factors.
The average age of a patient with multiple sclerosis is 30 years. The disease often affects active and hard-working people with a good education, a prestigious job, and a family. Often, due to late diagnosis and late initiation of treatment, these people risk losing many years of active life. However, in recent years, the situation with diagnosis has improved markedly: most patients are diagnosed within a year from the moment the first symptoms appear.
The symptoms of MS are excruciating: patients suffer from rapid fatigue, muscle weakness, their vision deteriorates, and it is difficult for them to move independently. Over time, the condition may worsen, and if left untreated, the disease can lead to disability. Without proper timely treatment, ten years after the diagnosis, every second patient will not be able to do basic housework, after 15 years they will lose the ability to move independently, and after 25 they will not be able to walk even with support.
Music critic Ekaterina Biryukova, economist and public figure Irina Yasina, and head of the public organization of patients Fedor Shishlyannikov have been living with multiple sclerosis for many years. All of them became the heroes of the documentary film “The Scar”, shot by Russian writer, TV presenter and literary critic Alexander Arkhangelsky and director Tatyana Sorokina. In their work, the authors were able to show the strength and fragility of a person who is faced with a disease, and delicately convey the inner experiences that he goes through. Experts Ekaterina Popova, Yan Vlasov and Rinat Bogdanov, who have dedicated their professional lives to helping people with multiple sclerosis, are joining the dialogue.
© Documentary film “Scar”
There are several types of multiple sclerosis. Approximately 15% of patients develop primary progressive MS (PPMS). This form is transient, with neurodegenerative processes predominating from the very beginning, which is why neurological symptoms increase rapidly. Most (up to 90%) patients are diagnosed with relapsing-remitting MS (RRS): with it, periods of exacerbation are replaced by periods of remission with complete or incomplete recovery of functions. In every second case, RMS will eventually develop into a more severe form – secondary progressive MS (SPMS). In Russia, SPMS is observed in about 80 thousand people.
Signs that RMS has begun to progress to SPMS are considered to be an increase in the patient’s neurological symptoms continuously for six months. And it seems that the time has come for remission, but instead of it, an increase in neurological deficit is observed. One of the key indicators of the formation of SPMS is the inability to return to baseline after an exacerbation. However, at this stage, patients may not notice deterioration. If, after an exacerbation, a symptom, such as pain in the legs, goes away, then with progression, the symptoms increase gradually, so it is possible to assess the overall deterioration only after some time. For example, after three months, the patient realizes that if earlier he could easily walk a kilometer, now he can hardly overcome 500 meters.
Doctors use various tests to assess the progression of disability, such as measuring the time it takes a patient to take 25 steps, fine motor skills, and cognitive abilities.
Still, there are no clear criteria for diagnosing this type of MS, so a combination of signs is taken into account (at the same time, in Russia, SPMS is detected with a delay of 2–3 years, sometimes even at this stage, patients learn for the first time that they have multiple sclerosis). Degeneration processes begin to prevail over inflammatory processes. A person begins to rapidly weaken, lose efficiency, it becomes more and more difficult for him to move around; there may be problems with speech, swallowing, motor skills, imbalance, as well as spasms, fatigue, pain, depression, unsteadiness when walking, frequent urge to urinate. In 58–80%, cognitive abilities (memory, speech, attention, perception, speed of thinking) also suffer. 92% of patients with SPMS today have a disability.
SPMS has an early form, when the inflammatory process is still active and causes periodic exacerbations of the disease. In addition, there is secondary progressive MS without exacerbations (or inactive), when in the absence of exacerbations the disease progresses.
Many Russian patients find themselves isolated from society due to illness, fall into depression, lose their jobs and families. According to the Patient Quality of Life Assessment survey, more than 70% of people with SPMS have had to leave or have lost their jobs. Most of them need help with everyday life and technical means of rehabilitation.
However, if the diagnosis is made on time and treatment is started in time, patients have a chance to live a long and happy life. For example, already today in Europe, MS patients live on average as long as in the population. Science does not stand still, and every year new drugs become available for MS patients, new mechanisms of action and dosing regimens of drugs appear, allowing them to undergo therapy in courses.
So, in our country, several drugs for the pathogenetic treatment of relapsing-remitting MS are registered. They are called “drugs that change the course of MS” – DMTs. They reduce the frequency and severity of exacerbations, slow down the rate of progression, neurological deficits, and delay the development of cognitive impairment. Their early administration may help prevent the development of SPMS in a patient. In addition, some drugs in this group are also prescribed for the active form of SPMS, since they affect inflammatory activity.
In addition, a targeted drug has recently appeared in Russia for the treatment of secondary progressive multiple sclerosis, regardless of how it proceeds – with or without exacerbations. Unlike drugs that suppress inflammation and reduce the frequency of exacerbations, the new drug can slow the progression of the disease and the onset of disability. Moreover, the drug has a positive effect on the cognitive sphere and reduces the frequency of exacerbations.
The sooner treatment is started to reduce the activity of the inflammatory process and slow down the growth of brain lesions, the more effective the therapy will be and the greater the chance of delaying severe consequences for many years. After all, as the processes of neurodegeneration progress, the disease becomes more difficult to treat and the prognosis of patients worsens. However, the fact that drugs for the treatment of even the most severe type of SPMS have already appeared is encouraging.
Life expectancy of people with multiple sclerosis
Multiple sclerosis is a chronic disease; lifelong disease. It cannot be cured, but can be controlled with medication. Many people with this disease, especially immediately after diagnosis, wonder: will my life expectancy be shortened?
Much research has been done on the life expectancy of people with multiple sclerosis. Every decade, the idea of the duration and quality of life of people with multiple sclerosis is significantly adjusted. This is due to a number of reasons: firstly, the number of patients with this disease is increasing. And this growth is due not only to improved diagnostics, but also to the actual growth of autoimmune diseases in our country and abroad. Secondly, in contrast to the increase in the incidence, people are creating new more and more effective drugs that can achieve a sustainable remission of multiple sclerosis. Thirdly, demyelinating diseases, and multiple sclerosis belongs to this group of diseases, become less homogeneous, new subtypes of diseases are distinguished in them, new mechanisms of their development are discovered, which in turn allows more targeted prescribing of drugs, developing an individual approach to therapy.
Life expectancy is one of the so-called epidemiological indicators. Epidemiology is the science that deals with the patterns of occurrence and spread of disease. It operates with a whole set of indicators, which include life expectancy. According to the latest data in articles from various scientific journals for 2021 and 2022 (for example: Diagnosis and Treatment of Multiple Sclerosis by Marisa P. McGinley, DO et al. JAMA, Feb 23, 2021), life expectancy in people with multiple sclerosis is reduced slightly – not more than 10% of the total life expectancy of the population. For example, the average life expectancy of the population in Moscow is 78 years, so the life expectancy of Muscovites suffering from MS should be 72 years.
The second question is the question of the quality of life: how will a person with multiple sclerosis live through this age, in what condition will he be? Let’s try to answer this question. The main factor affecting the quality of life is the effectiveness of treatment, i.e. the correct selection of DMTs and the timeliness of the transition from one drug to another. And here the joint work of a specialist and a person with MS is important. If you go to the clinic on time, and the MS specialist correctly determines the tactics of treatment, then the number and severity of disorders that subsequently cause disability are significantly reduced, and a NEDA (non evidence of disease activity) state can also be achieved, when there are no new foci on the MRI and clinical exacerbations of MS.
In addition to drug treatment, people with MS can reduce the effects of factors that increase the activity of multiple sclerosis: smoking, vitamin D levels, reducing stress, heat stress (overheating).