Nikki's Early MS Diagnosis Journey: Early MS diagnosis is vital for effective treatment and management. Proactively advocating for medical care can lead to better outcomes, despite challenges like painful tests and high medication costs.
Early diagnosis of multiple sclerosis (MS) is crucial for effective treatment and management of the condition. Nikki, who was diagnosed in 2007 at the age of 27, shared her experience of being diagnosed after experiencing only headaches, which turned out to be a symptom of MS. Had her GP not discovered it when she did, Nikki might not have shown any symptoms for a decade, and her condition would have been much worse. The diagnostic process involved various tests, including a spinal tap, which she described as a painful experience. After several attempts with different medications, Nikki found relief with an infused medication, but the high cost and side effects are challenges she continues to face. Nikki's story underscores the importance of being proactive about health concerns and advocating for timely and appropriate medical care.
Living with the Uncertainties of Multiple Sclerosis: Despite the challenges and uncertainties of living with MS, focusing on the present and maintaining a positive attitude can help individuals find joy and live relatively independent lives.
Living with multiple sclerosis (MS) comes with numerous challenges and uncertainties. MS affects people differently, and for Nikki, her condition has led to various symptoms such as coordination and balance issues, numbness and tingling, fatigue, speech difficulties, and bladder control loss. Her condition also increases her risk for PML, a potentially life-threatening brain infection. Despite these challenges, Nikki remains grateful for her ability to walk and live a relatively independent life. However, she fears the future and the potential burden she may become to her loved ones as her condition progresses. The uncertainty and fear of the unknown can be overwhelming, but Nikki tries to focus on the present and find joy in her daily life. Ultimately, living with MS requires resilience, acceptance, and a positive attitude.
Understanding MS goes beyond diagnostic criteria: MS is a complex disease with physical symptoms and emotional challenges, requiring a holistic approach to care and research.
Key takeaway from this discussion about multiple sclerosis (MS) is that while we can learn a lot about the specific biology of this complex disease, it's essential to remember that the experience of someone living with MS goes beyond diagnostic criteria and measurable scales. MS is an autoimmune inflammatory, chronic, demyelinating neurodegenerative disease of the central nervous system, characterized by demyelination, inflammation, and scar formation. The most common form is the relapsing-remitting type, affecting up to 90% of cases, while the primary progressive form accounts for about 10%. The discussion highlighted the importance of listening to people's stories and acknowledging the feelings and challenges they face, emphasizing the inadequacy of our current definitions and measures of diseases. The podcast also paid tribute to Sylvia Lowery, a pioneer in raising awareness and research funds for MS, and shared a recipe for Sylvia's Sour, a quarantini cocktail named in her honor.
Understanding Demyelination in Multiple Sclerosis: Demyelination in MS leads to neurological symptoms like vision loss, weakness, spasticity, and autonomic dysfunction. Gradual process, but remyelination is possible in some cases.
Myelin is a crucial component of our nervous system, acting as an insulating sheath around nerve fibers to enable proper signal transduction. Demyelination, the destruction of this sheath, can lead to various neurological symptoms due to impaired nerve impulses. Multiple Sclerosis (MS) often begins with a clinically isolated syndrome, which is the first manifestation of the disease. This syndrome can present as various neurological symptoms depending on the location of demyelination in the brain or spinal cord. For instance, optic neuritis, affecting the optic nerve, can result in vision loss or changes. Demyelination can occur in any part of the white matter, leading to a wide range of symptoms, including weakness, spasticity, abnormal sensation, and autonomic dysfunction. The demyelination process in MS happens gradually, and while there is no cure, remyelination is possible in some cases.
Characteristics of Clinically Isolated Syndrome in MS: A CIS in MS is marked by neurological symptoms lasting 24 hours, potential MRI findings, and can lead to multiple sclerosis diagnosis. Early diagnosis and treatment are essential for effective management.
A clinically isolated syndrome (CIS) in multiple sclerosis (MS) is characterized by neurological symptoms that last for at least 24 hours. These symptoms, such as loss of vision, tingling, or weakness, can be indicative of MS if accompanied by typical MRI findings. The presence of multiple lesions on MRI, even without clinical symptoms, can also lead to an MS diagnosis. Untreated, MS often leads to recurrent relapses and progressive worsening of disability due to damage to the underlying nerves during each demyelination event. Early diagnosis and treatment are crucial for managing the condition effectively.
Damage to myelin sheath leads to scarring and progressive disability in MS: MS involves damage to myelin sheath leading to scarring and neuronal damage, causing progressive disability. Autoimmune response from B cells, T cells, and self-reactive antibodies contributes to the disease's mechanistic underpinnings.
Multiple Sclerosis (MS) is a complex condition involving damage to the myelin sheath surrounding nerve fibers in the brain and spinal cord. While the brain and spinal cord can repair the myelin sheath, the process results in scarring, or gliosis, which leads to progressive disability over time. This damage is not only due to the direct impact on the myelin sheath but also from inflammation that harms the cells responsible for making myelin. The body's natural repair process includes regeneration and scar formation, but the scarring can result in neuronal damage. MS symptoms, such as fatigue, are believed to result from multiple areas of demyelination affecting various signals in the nervous system. There are two primary forms of MS: relapsing-remitting MS, where discrete relapses are followed by periods of recovery, and primary progressive MS, where neurologic function worsens continuously from the onset. Despite ongoing research, the ultimate cause of MS and the underlying mechanism of damage remain unclear. Autoimmunity, specifically B cells, T cells, and self-reactive antibodies, are known to play a significant role in MS's mechanistic underpinnings.
MS: An Immune-Regulated Disease Caused by the Attack on Myelin Sheath: Genetic polymorphisms, decreased sun exposure, smoking, and EBV infection are potential risk factors for MS, an immune-regulated disease where the immune system attacks the myelin sheath in the central nervous system.
MS, or Multiple Sclerosis, is an immune-regulated disease where the immune system mistakenly attacks the myelin sheath protecting nerve fibers in the central nervous system. This damage accumulates over time, leading to the symptoms associated with MS. The exact cause of MS is still unknown, but there are several genetic and environmental factors that have been linked to an increased risk. These include genetic polymorphisms near or in regions involved in immune response, decreased sun exposure or low vitamin D levels, smoking, and Epstein-Barr virus (EBV) infection. EBV, a human herpes virus, is particularly interesting as it preferentially infects and replicates in B lymphocytes, the cells responsible for producing antibodies. EBV has been implicated in the development of various cancers and has long been suspected as a potential factor in MS due to findings in cerebrospinal fluid. Recent evidence has provided strong support for this theory. While we don't have all the answers yet, understanding these factors can help in the ongoing research and potential prevention or treatment strategies for MS.
New research links Epstein-Barr Virus to Multiple Sclerosis: New studies find a significant increase in MS risk for those with past EBV infection and identify causal relationship, antibodies, and potential targets for early detection and treatment.
Recent scientific research provides strong evidence that infection with the Epstein-Barr Virus (EBV) significantly increases the risk of developing Multiple Sclerosis (MS). This association is supported by numerous studies, including a recent one published in Science, which found a 32-fold increase in risk for those who had EBV seroconversion before MS diagnosis. The study also identified a causal relationship between EBV infection, axonal degradation, and MS diagnosis. Additionally, another recent paper discovered antibodies produced in people with MS that bind to a specific EBV antigen and cross-react with a human cell surface protein associated with autoimmune demyelination. While the exact mechanisms of how EBV infection leads to MS are still unknown, these findings suggest that EBV is a necessary precursor to the development of MS. With this new understanding, there is a growing emphasis on early detection and treatment, including disease-modifying therapies that target B cells and other components of the immune system to prevent damage and prolong the time between relapses.
The origins of Multiple Sclerosis remain a mystery: MS is a complex disease possibly caused by genetics, environment, and viruses. Humans' large brains and high myelination may contribute, but why we get MS and other primates don't is unknown. Historical records suggest MS existed for centuries, but causes remain elusive.
The evolutionary origins of Multiple Sclerosis (MS) remain a mystery due to the lack of clear knowledge on its causation. MS is a complex disease that may involve interactions between genetic predisposition, environmental factors, and viruses like EBV. While it's suggested that humans' large brains and high myelination may contribute to MS, the exact reason why humans develop MS while other primates don't is still unclear. Additionally, the shift in the gender ratio of MS diagnoses over the past century could be due to various factors, including changes in diagnosis methods and societal attitudes towards women's health. The earliest recorded cases of MS date back to the 14th century, with Saint Ludwina of Schiedam being one of the first documented cases. Despite these historical records, the disease's causes and origins remain elusive, making it a significant challenge for researchers to understand.
Historical challenges in MS diagnosis and treatment: From the earliest recorded cases to modern times, MS diagnosis and treatment have been marked by uncertainty and ineffective interventions, with historical figures like Ludwina of Schiedam and Augustus Dest providing valuable insights into the disease and its impact on daily life.
The history of multiple sclerosis (MS) diagnosis and treatment is marked by uncertainty and a lack of effective interventions. This is evident in the cases of Ludwina of Schiedam, the earliest recorded case of MS symptoms, and Augustus Dest, a grandson of King George the 3rd who also experienced MS symptoms. Ludwina's case is debated, but it seems more likely to be MS than other early stories. Dest's diaries provide valuable insights into the disease and its impact on daily life. However, treatments during their times were varied and often ineffective, including leeches, hot baths, and electrotherapy. Even after MS was formally described as a disease, doctors continued to experiment with different therapies without much success. These historical accounts highlight the challenges faced in understanding and managing MS and the progress made over time.
French neurologist Jean Martin Charcot identifies Multiple Sclerosis: Jean Martin Charcot, a French neurologist, first identified Multiple Sclerosis (MS) in the late 1800s by observing unusual plaques in the nervous systems of deceased patients with MS symptoms. His descriptions of the disease's symptoms, pathology, and potential causes influenced MS research for decades.
Jean Martin Charcot, a French neurologist and pathologist, played a significant role in the identification and early description of Multiple Sclerosis (MS). Charcot, who worked at a teaching hospital for poor Parisian women, noticed unusual plaques in the nervous systems of several deceased patients who had reported symptoms like numbness, vision problems, and movement difficulties. He believed these plaques indicated a new disorder, which he described in detail in a series of lectures in 1868. Charcot's descriptions, which included the disease's symptoms, pathology, and potential causes, remained influential for decades. However, some of his beliefs, such as the idea that emotional stress could cause MS, were later disproven. Despite this, Charcot's work sparked significant interest in MS research and helped shape the understanding of the disease for many years.
From germ theory to gut microbiome: The evolving understanding of MS: From the misdiagnosis era to current research, MS understanding has evolved significantly, from germ theory to gut microbiome.
The historical context of medical discoveries and prevailing medical thought significantly influenced the diagnosis, treatment, and understanding of Multiple Sclerosis (MS). From the mid-1800s onward, advancements in microscopes and autopsies led to the identification of MS, but researchers also proposed various microbes as potential causes due to the germ theory trend. More recently, attention has turned to the role of the gut microbiome in MS. Early attempts to treat MS with antibiotics reflect the prevailing medical thought at the time, and diagnosis was often challenging due to reliance on observable signs rather than symptoms. People with MS were frequently diagnosed with other conditions, such as neurosyphilis or hysteria, and the stigma surrounding "invisible diseases" continues to this day. Pierre Marie's quote from the early 1900s, expressing optimism about preventing MS with a substance like coke, remains relevant as research continues to unravel the complexities of this debilitating disease.
Historical misdiagnosis and misunderstanding of MS: MS was once misdiagnosed as hysteria, but increased awareness and research have led to better understanding and diagnosis rates.
The lack of visible symptoms in people with Multiple Sclerosis (MS) has led to a history of misdiagnosis and misunderstanding of the disease. MS was once commonly misdiagnosed as hysteria, and people living with MS were diagnosed as hysterical well into the mid-20th century. However, with the increase in neurologists and large-scale studies, MS became better understood, and awareness and diagnosis rates increased. The disease's pattern of occurring more frequently in northern climates has led some to suggest a historical connection. Sylvia Lowery, whose brother had MS, played a significant role in raising awareness and funding for MS research by founding the National Multiple Sclerosis Society and the Multiple Sclerosis International Federation. Her efforts helped bring together leaders in the field to set objectives for understanding and finding a cure for MS.
The story of MS: resilience, advocacy, and medical advancements: The National MS Society's founding in the 1940s led to increased awareness and support, with celebrities and politicians playing a crucial role. Key medical advancements, like clinical trials and the MRI, revolutionized understanding and diagnosis.
The story of multiple sclerosis (MS) is one of resilience, advocacy, and medical advancements. The founding of the National MS Society in the 1940s marked a turning point, leading to a significant increase in awareness and support for those affected. Celebrities and politicians played a crucial role in amplifying the cause, leading to resources and funding for research. Key medical advancements, such as clinical trials and the MRI, revolutionized the understanding and diagnosis of MS. Today, while there are effective medications to manage symptoms, there is still much to learn about the disease, including its causes and the full scope of its impact. With an estimated 2.2 million prevalent cases worldwide, MS remains a pressing health issue, particularly in North America and Western Europe.
MS Rates Vary by Latitude but Not Definitively: MS rates correlate with latitude but are not definitively linked, and research on MS is crucial for understanding disease and potential prevention
While there is a correlation between multiple sclerosis (MS) and geographical locations closer to the equator having lower rates and northern latitudes having higher rates, it's not a definitive rule. Indigenous populations in northern areas can have very low MS rates. Migrants from low-risk areas to high-risk areas still maintain their low risk, but their children may have a higher risk. Prevalence of MS has increased due to earlier diagnosis and better treatments, leading to more diagnosed cases and longer lifespans. In 2016, over 18,000 deaths and 1,000,000,001 disability-adjusted life years were attributed to MS. Research on MS is crucial not only for understanding the disease but also for neurodegeneration and cell regeneration, leading to new treatments for MS and related disorders. New studies suggest that EBV infection may be a necessary precursor to MS, implying potential prevention through EBV infection prevention.
Exploring the Interplay of mRNA Technology and Epstein-Barr Virus in Multiple Sclerosis Research: Recent phase one trials for an mRNA vaccine targeting Epstein-Barr Virus (EBV) have been initiated by Moderna, with potential implications for MS treatments, prevention, or even cures.
The rapid advancements in mRNA technology developed for COVID-19 vaccines are now being applied to research on Epstein-Barr Virus (EBV) and its potential role in Multiple Sclerosis (MS). Moderna, a leading vaccine developer, has recently initiated phase one trials for an mRNA vaccine targeting EBV. This interplay between basic science research on one disease can have significant implications for others, opening up exciting possibilities for MS treatments, prevention, or even cures. Tune in for an upcoming episode where we'll dive deeper into the world of EBV with Dr. Mika Lufthig, an expert in the field. For more information, check out the book "Multiple Sclerosis: The History of a Disease" by Jock Murray, as well as various scientific papers on the topic, particularly those published in January 2022. The National MS Society website is also a valuable resource for understanding MS symptoms and research. Your support helps us continue producing insightful content. Stay tuned!
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ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
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LINKS
If your podcast app doesn’t allow you to click on these links, you’ll find them in the show notes in the RealTalk MS app
or at www.RealTalkMS.com
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030 - Multiple Sclerosis Alternative Therapies - Low Dose Naltrexone (LDN) and Multiple Sclerosis - with Linda Elsegood
Linda Elsegood, Founder of the LDN Research Trust, lives with relapsing/remitting MS. She was diagnosed with multiple sclerosis (MS) in August 2000 at the age of 44, and was having attacks every 6 months; it took months for a relapse to recede, only to have another one start. In October 2003 she was told she had secondary progressive MS and there was nothing anyone could do to help her.
She decided to take matters into her own hands, and started Low Dose Naltrexone in December 2003.
Hear Linda tell her Multiple Sclerosis story and discover what is LDN and how can it sometimes help people with MS.
This alternative treatment has eased Linda's MS Symptoms, removed her pain and enabled her to regain her life.
https://ldnresearchtrust.org/about-the-ldn-research-trust
and the link to the forthcoming LDN Book 2 launch tour is: https://ldnresearchtrust.org/ldn-book2
Link to sign up as a MS Action Taker is: https://multiplesuccess.activehosted.com/app/forms/25
Copyright: Bron Webster 2020 www.multiplesuccess.co.uk
036 - What are the Best Gifts for someone with Multiple Sclerosis at Christmas
In this episode, Bron (who produces The MS Show) explores the best Christmas gifts for someone who has Multiple Sclerosis.
Listen in to get some ideas and also some tips to avoid gift gaffs for the person in your life who lives with MS .
Don’t celebrate Christmas? This episode is relevant for any big celebrations.
Copyright Bron Webster 2020 https://multiplesuccess.co.uk
Link for your first Christmas download: https://multiplesuccess.ac-page.com/mind-over-ms-christmas
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___________
ADD YOUR VOICE TO THE CONVERSATION
I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.
Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!
Email: jonstrum@RealTalkMS.com
Phone: (310) 526-2283
___________
LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Download the RealTalk MS App for iOS
Download the RealTalk MS App for Android
Give RealTalk MS a Rating & Review
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___________
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010 Diagnosis Holly Ford Pt1
Holly is a young person with Primary Progressive MS. Her diagnosis story is one of frustration.
She was aged 24 at her eventual diagnosis but she had to go to her Doctor 3 times and kept being told ‘there’s nothing wrong with you’. Using some great advice from her Personal Trainer, Holly was eventually sent by her Doctor to hospital. Several MRI scans later, one using contrast dye, the diagnosis became clearer.
“If it was a female consultant it might have been a bit different”
We talk about Holly learning how to self-catheterise and also clear out her bowels - because with Multiple Sclerosis these things are common, but not easily spoken about.
“I look at the smaller picture … I look at each day rather than getting through a month”
“If I went to part-time, that’s me letting the MS win”
Initially, she was diagnosed with demyelination and was told that because of the ‘single’ event it could not be classed as ‘multiple sclerosis’. This changed after further scans.
The MS Society asked Holly to help in the Parliamentary campaign to gain approval for Ocrevus (the only Disease Modifying drug presently available for Primary Progressive MS.
Copyright Bron Webster 2020