Materiały źródłowe

• #1 Primary Lateral Sclerosis – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK609096/

  Primary lateral sclerosis (PLS) is a rare neurodegenerative disorder that primarily affects the upper motor neurons, leading to progressive muscle stiffness, poor coordination, balance difficulties, and sometimes speech and swallowing challenges. […] Although there is no cure or disease-modifying treatment, symptom management through physical therapy, medications for spasticity, and supportive care can improve the quality of life for those affected. […] The course emphasizes the importance of early diagnosis and timely referral to specialists. Additionally, participants gain insights into effective symptom management strategies and the benefits of a collaborative, interprofessional approach. […] Working with a team that includes neurologists, physical therapists, speech therapists, and other specialists ensures a comprehensive care plan that addresses the diverse needs of patients with PLS.

• #2 Primary lateral sclerosis: diagnosis and management – PubMed

  https://pubmed.ncbi.nlm.nih.gov/32217663/

  Primary lateral sclerosis (PLS) is a rare neurodegenerative disorder at the upper motor neurone extreme of the spectrum of motor neurone disease. The diagnosis is clinical and based on the characteristic features of slowly progressive spasticity beginning in the lower limbs, or more rarely with spastic dysarthria, typically presenting around 50 years of age. The absence of lower motor neurone involvement is considered to be a defining feature, but confident distinction of PLS from upper motor neurone-predominant forms of amyotrophic lateral sclerosis may be difficult in the first few years. […] Specialised multidisciplinary care is recommended. Increasing international research cooperation is required if the aspiration of dedicated therapeutic trials for PLS is to be achieved.

• #3 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  When only UMNs are involved, the disease is called primary lateral sclerosis (PLS). The course of PLS differs from that of ALS and is usually measured in decades. […] PLS should not be considered a form of ALS, and is a distinct entity. […] Survival in cases of primary lateral sclerosis (PLS), which is, strictly speaking, not a form of ALS, is measured in decades.

• #4 Primary lateral sclerosis (PLS) | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/primary-lateral-sclerosis-pls

  Primary lateral sclerosis (PLS) is a type of motor neuron disease. A motor neuron disease affects the nerve cells in the brain that control movement. In PLS, the breakdown of nerve cells causes weakness in the muscles that control the legs, arms and tongue. […] Symptoms of primary lateral sclerosis usually take years to develop and get worse. Symptoms generally begin in the legs. Rarely, PLS begins with weakness in the tongue or hands. Then weakness gradually moves down the spinal cord to the legs. However, symptoms vary from person to person. Symptoms may include: Stiffness, weakness and muscle spasms in the legs. This is known as spasticity. Rarely, spasticity starts in only one leg and moves to the arms, hands, tongue and jaw. […] In primary lateral sclerosis, the nerve cells in the brain that control movement slowly break down and stop working. These nerve cells are called upper motor neurons.

• #5 Primary Lateral Sclerosis (PLS) | Synapticure

  https://www.synapticure.com/blog/synapticure-launches-to-serve-primary-lateral-sclerosis-patients

  Primary Lateral Sclerosis (PLS) is a motor neuron disease, which means that it lies on the same spectrum as ALS. It is a very rare disease state that progresses slower than ALS, but is still profoundly debilitating. Patients with PLS will experience weakness, typically starting in the legs, as well as symptoms such as painful spasticity, cramps and spasms, which can often be disabling. […] There is currently no cure for PLS and treatment is mainly symptomatic and focused on improving quality of life with medications and physical therapies. […] PLS may be underdiagnosed early in the disease because it can often present like other diseases such as: ALS, hereditary spastic paraplegia (HSP) syndromes or multiple sclerosis (MS). […] Our Synapticure neurologists will make sure that you have all of the proper testing done and in place so that your diagnosis is an accurate one. That may include a comprehensive EMG, MRI of the brain and spine, a spinal tap, and genetic testing. This comprehensive testing ensures that PLS is the correct diagnosis and that these other diseases have been ruled out, as their treatments are very different. […] The enrollment process for PLS patients who wish to join Synapticure is the same as it is for ALS patients.

• #6 Primary Lateral Sclerosis: An Overview

  https://www.mdpi.com/2077-0383/13/2/578

  Primary lateral sclerosis (PLS) is a rare neurodegenerative disorder which causes the selective deterioration of the upper motor neurons (UMNs), sparing the lower motor neuron (LMN) system. The clinical course is defined by a progressive motor disability due to muscle spasticity which typically involves lower extremities and bulbar muscles. […] The clinical course is characterized by a progressive motor disability due to muscle spasticity which typically involves lower extremities and bulbar muscles. […] The main knowledge gap is the lack of specific biomarkers to improve the clinical diagnostic accuracy. […] We also discussed the current knowledge gaps still present in both diagnostic and therapeutic fields when approaching this rare condition. […] A multidisciplinary approach should be preferred in order to manage several disturbances that can be present along the disease course, such as spasticity, fatigue, pseudobulbar palsy, pain, depression, and sphincteric and sexual dysfunctions.

• #7 Primary Lateral Sclerosis – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK609096/

  Treatment is centered on symptom management and improving the quality of life in patients with PLS. Given the numerous symptoms seen in PLS, an interprofessional approach should be taken to improve mobility, reduce spasticity, and facilitate activities of daily living. […] Physical and occupational therapy are vital in improving gait and balance and can help determine the need for additional durable medical equipment. […] Speech therapy can be helpful in those with bulbar symptoms who have dysphagia or speech difficulties. […] Pseudobulbar affect is commonly seen in PLS, and recognition with screening and early treatment with medications can reduce social withdrawal and positively impact patients’ quality of life. […] Effectively managing PLS requires a comprehensive, interprofessional approach involving close collaboration among clinicians, nurses, pharmacists, and other healthcare professionals. […] Each member is critical in enhancing patient-centered care, safety, and outcomes.

• #8 Primary Lateral Sclerosis | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/164562

  Spasticity is often the most disabling symptom, and first-line oral agents include baclofen, benzodiazepines, and tizanidine. […] Patients who have sedating adverse events from these agents but have benefits may trial intrathecal baclofen and subsequent baclofen pump placement. […] Botulinum toxin type A can also be used to treat spasticity. […] Cognitive and neuropsychological features can be seen in PLS, and cognitive screening tests should be implemented in patients with PLS to assess for possible frontotemporal dysfunction, language deficits, and problems with executive function. […] Screening for mood symptoms, especially depression, is essential, and early referral to a psychiatrist or therapist is recommended when appropriate. […] Effective management of PLS requires a comprehensive, interprofessional approach involving close collaboration among clinicians, nurses, pharmacists, and other healthcare professionals. […] Each member is critical in enhancing patient-centered care, safety, and outcomes.

• #9 Amyotrophic Lateral Sclerosis: Disease State Overview

  https://www.ajmc.com/view/amyotrophic-lateral-sclerosis-disease-state-overview

  According to a review by the Quality Standards Subcommittee of the American Academy of Neurology (AAN), specialized multidisciplinary teams should be considered for patients with ALS to potentially decrease mortality (level B), increase quality of life (level C), and optimize the delivery of healthcare (level B). […] Neurologists assess, monitor, and treat patients. They are also involved in clinical trials and research that may be beneficial to the patient. The respiratory team, consisting of pulmonologists and respiratory therapists, provides patients with respiratory support because breathing issues are a key symptom in progressive ALS. Occupational therapists are essential to identifying a patients challenges with ADLs and assisting them with modifying their current practices or overcoming these challenges.

• #10 Primary lateral sclerosis (PLS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/primary-lateral-sclerosis/diagnosis-treatment/drc-20353972

  There are no treatments to prevent, stop or reverse primary lateral sclerosis. Treatment focuses on relieving symptoms and preserving function. […] You might take medicine to relieve these symptoms: […] Muscle spasms may be relieved by baclofen (Fleqsuvy, Ozobax, Lyvispah), tizanidine (Zanaflex) or clonazepam (Klonopin). These medicines are taken by mouth. […] If muscle spasms aren’t controlled with oral medicine, your health care professional might recommend surgery to implant a medicine pump. The pump delivers baclofen directly to the spinal fluid. […] Stretching and strengthening exercises can help maintain muscle strength, flexibility and range of motion. The exercises also may help prevent joint immobility. […] Speech therapy might help with communication and swallowing if your facial muscles are affected by PLS.

• #11 Primary Lateral Sclerosis (PLS): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/17986-primary-lateral-sclerosis

  Primary lateral sclerosis (PLS) is a progressive neuromuscular (nerves and muscles) condition that causes worsening muscle weakness and/or stiffness. […] Because theres no cure for PLS, treatment focuses on managing your symptoms and providing mobility support like using a cane or a walker. […] Treatment for PLS helps you manage your symptoms and could include: medications to reduce muscle stiffness, spasms and difficulties swallowing; physical therapy to decrease muscle weakness, and improve muscle flexibility and joint range of motion; devices to assist with independence and mobility, like a cane, walker or wheelchair; speech therapy or devices to assist with speaking. […] Common medications to treat symptoms of PLS include: Baclofen and tizanidine for muscle stiffness; Quinine for muscle cramps; Diazepam to relax your muscles.

• #12 Decreased spasticity in primary lateral sclerosis after botulinum toxin injection: A case report | Neurología (English Edition)

  https://www.elsevier.es/en-revista-neurologia-english-edition–495-articulo-decreased-spasticity-in-primary-lateral-S2173580818300014

  Primary lateral sclerosis (PLS) is a variant of amyotrophic lateral sclerosis (ALS) in which the upper motor neuron and, secondarily, the corticospinal tract degenerate, with no clinical or neurophysiological involvement of the lower motor neuron. Clinically, the disease is characterised by progressive spasticity and poor limb coordination. Prognosis of PLS is significantly better than that of classic ALS, with slower progression and higher survival rates. Treating spasticity can have a meaningful impact on patients quality of life, although few studies have addressed this topic. […] We began treatment with Lioresal in combination with stretches in the therapeutic gymnasium and hydrotherapy. Lioresal was not tolerated, and gait function did not change with the physiotherapy. We therefore proposed attempting to control spasticity with local BTX injections. In February 2013, 50 units of BTX were injected into the left and right solei. The patient continued with the physiotherapy programme, progressively performing stretches, muscle toning, balance control exercises, and gait re-education. One month later, there was a significant improvement in the patient’s spasticity, resulting also in a functional improvement. The patient was able to walk indoors with one cane and short distances outdoors with 2. Falls had become less frequent. This made the patient feel safer and enabled him to improve his physical condition by performing his pool and toning exercises, according to the instruction he had received, outside the setting of the therapeutic gymnasium.

• #13 PLS vs ALS: Difference, Symptoms, Causes, Treatments

  https://www.verywellhealth.com/pls-vs-als-6828402

  PLS is more common in men than women, and the onset of the disease is typically between ages 40 and 60. PLS progresses gradually over several years or even decades. […] Treatment for PLS is typically symptomatic and may include the following: Muscle relaxants to reduce spasticity, which may include Lioresal (baclofen), Zanaflex (tizanidine), or benzodiazepines; Pain relieving drugs; Antidepressants for depression; Physical therapy; Occupational therapy and rehabilitation to prevent joint immobility and slow muscle atrophy; Assistive devices such as supports or braces; Speech synthesizers; Wheelchairs if needed; Speech therapy if facial muscles are affected. […] A proper diagnosis of PLS or ASL is vital because treatments can vary depending on the disease. Unfortunately, no treatments can reverse or cure motor neuron damage caused by PLS or ALS. Treatments can help control symptoms, prevent complications, and improve the quality of life for patients with one of the diseases.

• #14 Primary Lateral Sclerosis: An Overview

  https://www.mdpi.com/2077-0383/13/2/578

  Currently, there are no disease-modifying treatments approved or tested in experimental trials for PLS, probably due to the rarity of the disease and lack of significant understanding of its underlying pathophysiology. Therefore, the approach to treatment remains essentially targeted to alleviate the symptoms and improve the quality of life of patients. […] For spasticity, which is the most disabling symptom, the first-line oral agents include baclofen, tizanidine, benzodiazepines (e.g., clonazepam and diazepam), gabapentin, pregabalin, and dantrolene. […] The management of excess oral secretions or drooling is similar to that used in ALS. Most patients have beneficial effects with oral anticholinergic medications—amitriptyline, scopolamine, glycopyrrolate, or atropine drops. […] PLS appears to be a rare but distinct disease, which, first and foremost, represents a diagnostic challenge, due to the clinical overlap with HSP and UMN-predominant ALS, especially in the early phases.

• #15 Primary Lateral Sclerosis | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/164562

  PLS is diagnosed after a detailed clinical history, physical exam, and diagnostic testing have excluded other causes. […] Treatment is supportive with the primary goal of improving functional mobility. […] Currently, no cure or disease-modifying treatment for PLS has been identified. […] Treatment is centered on symptom management and improving the quality of life in patients with PLS. […] Given the numerous symptoms seen in PLS, an interprofessional approach should be taken to improve mobility, reduce spasticity, and facilitate activities of daily living. […] Physical and occupational therapy are vital in improving gait and balance and can help determine the need for additional durable medical equipment. […] Speech therapy can be helpful in those with bulbar symptoms who have dysphagia or speech difficulties.

• #16 Primary lateral sclerosis (PLS)

  https://www.mymlc.com/health-information/diseases-and-conditions/p/primary-lateral-sclerosis-pls/

  There are no treatments to prevent, stop or reverse primary lateral sclerosis. Treatment, which focuses on relieving symptoms and preserving function, can include the following options. […] Stretching and strengthening exercises can help maintain muscle strength, flexibility and range of motion and prevent joint immobility. […] If your facial muscles are affected by PLS, speech therapy might help with communication and swallowing. […] If you experience difficulty with chewing and swallowing that make eating difficult, a nutritionist can offer diet tips, nutritional supplements or special feeding methods to help maintain your body weight. […] As PLS progresses, physical or occupational therapists may evaluate you periodically to determine whether you need assistive devices, such as a brace, cane, walker or wheelchair. Assistive technology devices may help with communication.

• #17 Primary lateral sclerosis (PLS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/primary-lateral-sclerosis/diagnosis-treatment/drc-20353972

  If you have trouble chewing and swallowing, a dietitian can offer diet tips, nutritional supplements or special feeding methods. This can help you maintain your body weight when symptoms make it hard to eat. […] As PLS symptoms get worse, you may need an assistive device. Physical or occupational therapists may evaluate you regularly to determine whether you need a brace, cane, walker or wheelchair. Assistive technology devices also may help with communication.

• #18 Primary lateral sclerosis (PLS) | UM Health-Sparrow

  https://www.uofmhealthsparrow.org/departments-conditions/conditions/primary-lateral-sclerosis-pls

  As a result, the nerves are not able to activate the motor neurons in the spinal cord, which control voluntary muscles. This loss causes movement problems. People with PLS may have problems with balance, weakness, slowed movement and clumsiness. PLS also may cause problems with speech and swallowing. […] There are no treatments to prevent, stop or reverse primary lateral sclerosis. Treatment focuses on relieving symptoms and preserving function. […] Speech therapy might help with communication and swallowing if your facial muscles are affected by PLS. […] If you have trouble chewing and swallowing, a dietitian can offer diet tips, nutritional supplements or special feeding methods. This can help you maintain your body weight when symptoms make it hard to eat. […] As PLS symptoms get worse, you may need an assistive device. Physical or occupational therapists may evaluate you regularly to determine whether you need a brace, cane, walker or wheelchair. Assistive technology devices also may help with communication.

• #19 Primary Lateral Sclerosis – PLEXUS

  https://plexusnc.com/primary-lateral-sclerosis/

  PLS is a slowly progressing type of MND. Its symptoms may take years to manifest to a degree that actually requires medical attention. […] While there are no internationally approved medications for PLS, doctors recommend a combination of occupational therapy, physiotherapy, speech therapy, nutrition plans, etc. to manage its symptoms. […] The best treatment for PLS is Plexus regenerative rehabilitation program. This program helps the patient manage symptoms of PLS, make changes to their current lifestyle, as well as enable them to achieve their aspirations for life. […] Plexus rehabilitation for MND also offers: Strengthening of muscles in the shoulder, neck, upper and lower limbs, and oral structures, Activities for daily living training, Endurance training and fitness management, Diets and nutrition plans, Hand function training, Functional splinting, Functional stretching for relief from muscle stiffness, Energy conservation and work simplification training, Counseling and caregiver support.

• #20 Primary lateral sclerosis (PLS)

  https://www.mymlc.com/health-information/diseases-and-conditions/p/primary-lateral-sclerosis-pls/

  Although there’s no cure for primary lateral sclerosis, you can make a few lifestyle choices to preserve muscle function for as long as possible: […] Stay active. Continue activity or exercise programs as long as you can comfortably and safely do so. Staying active may help you keep your existing function and slow the progression of the disease. […] Eat a healthy diet. Because PLS can cause your activity level to slow down, be sure you’re eating a nutritious diet to avoid excessive weight gain and added pressure on your joints. […] Primary lateral sclerosis (PLS) is a type of motor neuron disease that causes the nerve cells in the brain that control movement to fail over time. PLS causes weakness in your voluntary muscles, such as those you use to control your legs, arms and tongue. […] In primary lateral sclerosis, the nerve cells in the brain that control movement (upper motor neurons) slowly break down and fail over time. This makes the nerves unable to activate the motor neurons in the spinal cord, which control voluntary muscles. This loss causes movement problems, such as difficulty with balance, weakness, slowed movement and clumsiness, and problems with speech and swallowing.

• #21 Primary Lateral Sclerosis: Symptoms, Causes, Treatment | Qwark

  https://qwarkhealth.com/conditions/primary-lateral-sclerosis

  Primary Lateral Sclerosis (PLS) is a rare neurological disease that affects the functioning of the upper motor neurons. […] There is no cure for PLS, but treatment can help manage symptoms and slow down the progression of the disease. Medications, physical therapy, and occupational therapy are some of the treatments used to manage the symptoms of PLS. […] Physical therapy is an essential treatment option for PLS patients. It can help improve muscle strength and flexibility, reduce muscle stiffness, and alleviate pain. […] Medications are often prescribed to control muscle stiffness and spasms in PLS patients. Baclofen, tizanidine, and diazepam are some of the commonly prescribed medications. […] Assistive technology plays a crucial role in assisting PLS patients with communication difficulties. Augmentative and Alternative Communication (AAC) devices are used to improve communication.

• #22 Primary lateral sclerosis: Symptoms and treatment

  https://www.medicalnewstoday.com/articles/primary-lateral-sclerosis

  Other therapies, such as physical and speech therapy, can help the person maintain the ability to move and communicate. […] People may find living with PLS challenging and require support from their family, friends, and healthcare team. […] These professionals work closely with the person, their family, and their primary doctor to provide individualized treatment and support. […] For example, a dietitian may help with finding nutrient-dense foods that are easy to swallow, while a psychologist may support a persons mental health. […] Although no cure exists, medications and therapies can help manage symptoms. Various organizations provide information, resources, and emotional support to those living with PLS. […] With assistance from family, friends, and healthcare professionals, people with PLS can expect to live a typical lifespan.

• #23 8 years since my diagnosis – Primary Lateral Sclerosis – Rare Disease Day 2026

  https://www.rarediseaseday.org/heroes/8-years-since-my-diagnosis-primary-lateral-sclerosis/

  In January 31, 2008 I was diagnosed with upper motor neuron disease or Primary Lateral Sclerosis. Since PLS is a diagnosis of exclusion (meaning all diseases they are able to test for have been tested for and you don’t have them, they use that and your clinical presentation of neurological symptoms and diagnose you with PLS. The easiest way to explain PLS to strangers is that it is a progressive, degenerative neuromuscular disease, similar to ALS, though it is not fatal. There is no treatment and there is no cure. […] My FT job is managing my health care (doctor appointments, insurance claims, medications, mobility aids, etc.) I have gone from using two canes to (over time) using braces on both of my legs (AFOs), a wheeled walker with a seat both inside and outside the home, and am currently beginning to use a wheelchair more and more outside of the home. There is really only one organization that is working on trying to find treatments and a cure for PLS (and its hereditary counterpart HSP) and that is the Spastic Paraplegia Foundation. There are varying opinions regarding PLS and whether or not it is a variant of ALS (benign or non-fatal) or if it is a separate disease altogether. There are also varying opinions as to whether everyone diagnosed with PLS (which may be 500 people in the US or up to as many as 2000) actually has the same illness, due to the variance in symptoms and progression.

• #24 Primary Lateral Sclerosis (PLS): Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/17986-primary-lateral-sclerosis

  Medications are effective in decreasing your symptoms and helping you go about your day without interruptions. For your safety, you may want to consider using a cane, walker or wheelchair to give you more independence and confidence when you move. […] Contact your healthcare provider if you notice changes to your muscle strength. They may recommend taking medications or using certain mobility devices to help you gain more independence and feel better.

• #25 Primary Lateral Sclerosis

  https://www.brainfacts.org/diseases-and-disorders/neurological-disorders-az/diseases-a-to-z-from-ninds/primary-lateral-sclerosis

  PLS is not fatal. […] Treatment for individuals with PLS is symptomatic. […] Physical therapy, occupational therapy, and rehabilitation may prevent joint immobility and slow muscle weakness and atrophy. […] Assistive devices such as supports or braces, speech synthesizers, and wheelchairs may help some people retain independence. […] Speech therapy may be useful for those with involvement of the facial muscles.

• #26 Primary lateral sclerosis (PLS)

  https://www.mymlc.com/health-information/diseases-and-conditions/p/primary-lateral-sclerosis-pls/

  Periods of feeling down about having primary lateral sclerosis are expected and normal. Dealing with the reality of an incurable, progressive disease can be challenging. To cope with the disease and its effects, consider these tips: […] Seek emotional support. Family and friends can be great sources of comfort and support when you’re coping with the emotional aspects of long-term disease. […] Get professional help if you need it. When faced with a chronic illness, it’s not unusual to become overwhelmed at times. Seek professional counseling for another perspective or if you have depression and need advice on treatment. […] Know and use resources available to you. If you reach a point where your disease is restricting your activities significantly, ask your doctor about devices designed to help you stay independent.

• #27 Primary Lateral Sclerosis: Symptoms, Causes, Progression

  https://www.healthline.com/health/primary-lateral-sclerosis

  Primary lateral sclerosis (PLS) is a rare neurological disorder. It may take several years for a doctor to diagnose PLS. While there’s no cure, treatments can help improve quality of life. […] Treatment focuses on the symptoms a person is experiencing: Various therapies: Certain therapies may be used to help with muscle weakness, joint mobility, and everyday tasks. They may include physical therapy, occupational therapy, speech therapy, and rehabilitation. […] Medical devices: Medical devices like canes, wheelchairs, braces, and speech synthesizers can help people manage mobility issues and regain some independence with everyday activities. […] If you’ve been diagnosed with PLS, reach out to your doctor to ask about support groups in your area. Groups may not be called PLS groups specifically. Instead, they may be under the umbrella of motor neuron disorders (MND). […] Not all muscle issues or movement changes are related to motor neuron disorders. Even if yours are, it can take some time to be diagnosed with PLS. Your doctor can help you get treatment and different therapies to help with your symptoms while awaiting a diagnosis.

• #28 What is MND? | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd

  PLS is a rare form of MND, causing mainly weakness and stiffness that usually begins in the lower limbs. […] Usually, PLS is not life-shortening, as it progresses very slowly. This means it can take time to confirm a diagnosis of PLS. […] Contact our MND Connect helpline for details about an email group for people with PMA or PLS (the MND Association is not responsible for the group or moderation of its content).

• #29

  https://www.alsforums.com/community/threads/diagnosis-with-primary-lateral-scelerosis.682/

  Has anyone out there been diagnosed with PLS? […] PLS from a patient with the suspected disease: It is a rare form of ALS. It starts at your legs – and works its way up. It is quite slow progressing. Life span 3 – 30 years. […] PLS is Primary Lateral Sclerosis. […] PLS is as not as terminal as ALS is, and much much, much, more rare. […] It’s a disease of exclusion, as there is not one test for it. All other diseases must be ruled out. […] His care taker is also his wife, who has been a saint over the last 15 years providing 24 hour care. […] It is heatening to hear that some of us can live outside „the envelope” as they say and still continue to lead productive lives with an illness.

• #30 Primary Lateral Sclerosis: Background, Etiology, Epidemiology

  https://emedicine.medscape.com/article/1171782-questions-and-answers

  PLS usually affects adults and is usually sporadic. […] The availability of fairly effective symptomatic treatment using a multidisciplinary approach. […] The physician’s role in patient education about primary lateral sclerosis (PLS) includes informing the patient about the following: The distinction between PLS and other MND (particularly ALS) and the uncertainty of PLS evolving into ALS. […] Physical Therapy, Assistive Devices, and Ventilatory Support. […] Long-Term Monitoring.

• #31 Amyotrophic Lateral Sclerosis: Disease State Overview

  https://www.ajmc.com/view/amyotrophic-lateral-sclerosis-disease-state-overview

  Social workers assist with direction on the navigation of the social services system, end-of life-planning, such as advanced directives, and other available resources, such as transportation and support groups for both the patient and patients caregiver. […] In addition to the items mentioned above, patients may need genetic counseling. Patients with familial ALS may have genetic testing performed. After taking a thorough medical and family history, a genetic counselor will walk the patient through risk evaluation and genetic testing impact. […] Early diagnosis, participation in clinical trials, being able to identify signs and symptoms, and referral to a multidisciplinary specialty clinic are considered best practices.

• #32 Primary Lateral Sclerosis vs Amyotrophic Lateral Sclerosis – Klarity Health Library

  https://my.klarity.health/primary-lateral-sclerosis-vs-amyotrophic-lateral-sclerosis/

  Respiratory therapy is crucial in managing respiratory complications. For PLS, respiratory therapy focuses on maintaining optimal lung function and managing the rarely occurring respiratory symptoms. […] However, it is important to consider that the prognosis can vary among individuals based on several factors, such as age, overall health, symptom management, and access to medical care.

• #33

  https://journals.lww.com/raic/fulltext/2024/11030/total_intravenous_anesthesia_using_remimazolam_for.7.aspx

  Primary lateral sclerosis (PLS) is an extremely rare neurodegenerative muscle disease of unknown cause. The choice of anesthesia for surgery in patients with neurodegenerative muscle disease is extremely important, as it may affect the patients prognosis. […] General anesthesia using remimazolam and remifentanil without muscle relaxants may be an appropriate anesthesia technique in patients with PLS who require surgery. […] Total intravenous anesthesia with remimazolam could be considered a suitable anesthetic method for patients with primary lateral sclerosis. […] General anesthesia using remimazolam and remifentanil without muscle relaxants was used for a patient with PLS, and surgical closure of the larynx was performed stably and safely. This anesthesia technique may be appropriate when performing surgery in patients with PLS.

• #34 PLS : HSP & PLS : Spastic Paraplegia Foundation

  https://sp-foundation.org/understanding-pls-hsp/pls.html

  Primary Lateral Sclerosis (PLS) is a group of rare, degenerative, neurological disorders. They are sporadic, meaning there is no clear familial link, although there are hereditary forms of PLS. PLS is caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which results in increasing spasticity and weakness of voluntary muscles. […] Treatment is focused on symptom relief, such as medication to reduce spasticity; physical therapy and exercise to help maintain flexibility, strength, and range of motion; assistive devices and communications aids; and supportive therapy and other modalities. […] Life expectancy is normal. However, complications from falls or immobility may inadvertently shorten a person’s life.

• #35 What Is Primary Lateral Sclerosis?

  https://www.icliniq.com/articles/neurological-health/primary-lateral-sclerosis

  A motor neuron disease known as primary lateral sclerosis (PLS) causes the brain’s nerve cells that control movement to fail over time. The voluntary muscles that control the legs, arms, and tongue become weak as a result of PLS. The affected individuals may have problems with trouble maintaining their balance, move slowly, or be clumsy. The patient eventually may develop difficulty speaking, chewing, and swallowing. […] Primary lateral sclerosis progresses very differently from person to person and can last as long as 20 years on average. While some people are able to continue walking, others will eventually require wheelchairs or other assistive devices. Adult-onset PLS is not thought to shorten life expectancy in most cases, but as more muscles become disabled, it can gradually affect the quality of life.

• #36 My Journey with Primary Lateral Sclerosis (PLS) | Synapticure

  https://www.synapticure.com/blog/my-pls-journey

  PLS patients, like ALS and other neurodegenerative disease patients, deserve better care. […] Primary lateral sclerosis is a rare, debilitating neurodegenerative illness that is on the spectrum of motor neuron diseases. It is a disease without a cure and without disease modifying therapy. Current research in PLS has been sparse. Many of those with PLS find it difficult to overcome barriers to care and to receive appropriate symptomatic therapies. […] The average PLS patient is typically denied durable medical equipment, disability benefits, employment accommodations and much more. My multidisciplinary team finally gave me an ALS diagnosis on paper to eliminate the obstacles. Unfortunately, many in the PLS community dont have neurologists who will do this or who will prescribe drugs off label or make any accommodations whatsoever because on paper it says PLS. There are PLS patients who eliminate neurology visits entirely because they receive zero help. This is where Synapticure could be of great help to us.

• #37 PLS Treatment – Find The Best Stem Cells Therapy | GSC

  https://globalstemcells.com/treatment/pls/

  Unique Access provides access to an extensive treatment protocol for Primary Lateral Sclerosis (PLS) which utilises higher quantities of stem cells, innovative stem cell growth factors, extensive rehabilitation, and many supportive therapies and supplements. This effective combination of the most advanced medical technologies with functional medicine has helped patients achieve significant improvements. […] Stem cell therapy is considered to be an alternative method for treating Primary Lateral Sclerosis (PLS) and other neurodegenerative disorders. […] Unique Access provides access to the very best stem cell treatment packages using higher doses of Mesenchymal Stem Cells (MSC) to treat Primary Lateral Sclerosis (PLS). Many of the treated patients showed major improvements in motor function, muscle tone and strength, speech and swallowing, balance and coordination, and fine and gross motor skills. Moreover, the disease progression has been reported to be significantly slower after stem cell transplantation.

• #38 Primary Lateral Sclerosis: An Overview

  https://www.mdpi.com/2077-0383/13/2/578

  Primary lateral sclerosis (PLS) is a rare neurodegenerative disorder which causes the selective deterioration of the upper motor neurons (UMNs), sparing the lower motor neuron (LMN) system. The clinical course is defined by a progressive motor disability due to muscle spasticity which typically involves lower extremities and bulbar muscles. […] The clinical course is characterized by a progressive motor disability due to muscle spasticity which typically involves lower extremities and bulbar muscles. […] The main knowledge gap is the lack of specific biomarkers to improve the clinical diagnostic accuracy. […] We also discussed the current knowledge gaps still present in both diagnostic and therapeutic fields when approaching this rare condition. […] A multidisciplinary approach should be preferred in order to manage several disturbances that can be present along the disease course, such as spasticity, fatigue, pseudobulbar palsy, pain, depression, and sphincteric and sexual dysfunctions.

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