Bulbar als reddit. Here is my story so far: This started some time in end of 2023, but so subtle that I didn't pay attention to it. Can drink ok just can’t use straw anymore. My biggest bulbar issue is atrophy in tongue which causes me to have to concentrate eating to avoid biting cheeks and tongue. Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a rare, terminal neurodegenerative disease defined by the progressive loss of both upper and lower motor neurons that normally control voluntary muscle contraction. Bulbar onset is rarer and that under the age of 50-60 is insanely rare. Bulbar Onset Amyotrophic Lateral Sclerosis (ALS) is a subtype of ALS, a progressive neurodegenerative disease affecting motor neurons. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. Yes, people with bulbar als can live for a very long time, but median survival is 1-2 years post diagnosis, and no als doctor says you have 5-10 years at diagnosis. Your EMG detects ALS, both limb onset and bulbar onset which you said was clean. Jul 1, 2021 · This forum discusses experiences with respiratory and bulbar onset ALS, offering a platform for sharing insights and support among affected individuals. 1 In bulbar ALS, the muscles involved in breathing, speaking, and swallowing are usually affected first. The biggest thing I have is trouble swallowing. By understanding these signs, we can work together to improve diagnosis, care, and support for those affected by ALS. Twitching for 2 years without failure would be unheard of for bulbar. It's not causing saliva build up or anything bad yet but it's enough where I notice my swallowing feels different. She ordered another Brain MRI to also include face and neck, ALS genetic testing, and NfLc testing. If you truly had slurred speech (I’m talking about the very beggining of the onset) because of bulbar onset ALS, would you be able to move your tounge freely from side to side and outside/inside and up and down, around and also whistle? The main bulbar sign is a change of speech (talking like you’re drunk 24/7/consistently with no clue why or what’s going on). Oct 24, 2024 · Summary At ALS United Greater New York, we’re committed to empowering our community with knowledge about Amyotrophic Lateral Sclerosis (ALS). My father passed from bulbar onset and I currently have MND with clinical probability of ALS. Progressive Bulbar Palsy (PBP): The average life expectancy of someone who has been diagnosed with PBP is between 6 months and 3 years. This is for patients with ALS and their caregivers. Bulbar-onset is rarer and more aggressive, and begins in the throat/ mouth and moves outwards. In Bulbar Onset ALS, symptoms start from affected neurons in the corticobulbar area of the brain stem, affecting control of muscles of the face, head, and neck before the weakness of the limbs or trunk develops. Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative disease resulting in death in 2 to 4 years in most cases. Learn about treatment options and support resources for patients and caregivers. My left thigh had failed. He told me I do not have ALS. You do not have bulbar. Without a reliable biomarker, ALS is a clinical My Bulbar started over 2 years ago and the team at Henry Ford Hospital in Detroit got right on it. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Bulbar onset ALS? Hello I am very desperate. My mom has bulbar onset ALS. Uncover the early signs of ALS, like muscle weakness and slurred speech, and learn how timely diagnosis can make a difference in management. . Questions about bulbar Als? Hey! I have some questions about bulbar onset ALS. With voluntary muscle action My wife, who was recently diagnosed with ALS, was prescribed Nuedexta for her psedobulbar affect. Overview Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), known as ALS, is a nervous system disease that affects nerve cells in the brain and spinal cord. I couldn’t believe it! Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS is rare. Hey everyone, like the title says, my mother was just diagnosed with Bulbar Onset ALS after having slurring speech issues since October '19. Swallowing issues can be triggered by anxiety. Amyotrophic Lateral Sclerosis (ALS): People who have been diagnosed with ALS have an average life expectancy of 2 to 5 years. Bulbar ALS prognosis Generally, bulbar-onset ALS is associated with poorer health outcomes than spinal-onset ALS because of its early impact on swallowing and breathing. Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder affecting primarily the motor system, but in which extra-motor manifestations are increasingly recognized. Get flooded with saliva and sinuses. From yesterday, i speak funny, like can't say words correctly anymore, that kind of thing, and i have a slight hoarse, nasal voice and i am scared i am developing bulbar onset of ALS. ALS with bulbar involvement Bulbar onset ALS describes when ALS starts in the motor neurons that affect your face, neck, and head. I saw a neuromuscular specialist at UIowa. Anybody who tries to swallow 3-4 times in a row, with nothing in their mouth, will begin having tremendous difficulty swallowing. May 10, 2022 · ALS typically begins either as weakness in the limbs, called limb (or spinal) onset, or difficulty in speaking or swallowing, termed bulbar onset. We were originally given a timeline of 3-5 years, which shrunk rapidly to a matter of months. feels like it’s weaker and that I need to drag it but no sign of clinical weakness then two days ago my speech felt slurred and still does, but fortunately there is only me that thinks it slurred and no one else apparently. I hadn't heard about bulbar ALS but now it's terrifying me. She was diagnosed February 2023 after experiencing noticeable symptoms since July 2022. I am a 35 years old male with a long history of psychological issues, anxiety and panic disorder, emetophobia and since COVID hit intermittent massive health anxiety. I kept thinking my struggles with working out (jogging, elliptical, HIIT training) were due to me getting older. Eating is a pain. If thats fine, no worries. I was just wondering if anybody else experienced this type of ALS. If you truly had slurred speech (I’m talking about the very beggining of the onset) because of bulbar onset ALS, would you be able to move your tounge freely from side to side and outside/inside and up and down, around and also whistle? ALS is already extremely rare, Bulbar ALS is 4x more rare, and you are 20 years old which is practically unheard of for ALS. The onset of bulbar dysfunction My first symptoms of ALS were shortness of breath like your husband. First, a bi-pap machine assists breathing and saves energy…the best thing you can do. NAD - but the fact you started to experience this after “truama” the “popping your neck” would to my untrained eye point away from something like ALS and more towards a nerve entrapment/muscle injury. ALS is often called Lou Gehrig's disease after the baseball player who was diagnosed with it. This guide explores the early symptoms of ALS, emphasizing the importance of early detection and the variability of the disease. Young man with suspected bulbar ALS – what on earth should I do now? Posted by Will on February 8, 2022 at 9:09 am Hi all, First off: thanks to everyone for giving their time to answer questions here – I really appreciate it. Bulbar onset starts with slurred speach. Bulbar Symptoms I created another thread a few days ago but it seems my symptoms are getting worse. ALS causes loss of muscle control. We are here to help support each other in any way we can. Which I was happy with and after months of worry tried my hardest to move on. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. I went down the rabbit hole again and was convinced I had bulbar ALS. Understanding ALS: An Overview What is Amyotrophic Lateral Sclerosis (ALS)? ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder affecting motor neurons in the brain and spinal cord. Questions about bulbar Als Hey! I have some questions about bulbar onset ALS. Thoughts on bulbar symptoms. Limb onset is the most common, present in about 66% to 75% of ALS patients. Almost lost complete function in both arms, however, my bulbar and lower limbs are normal. I know the chances are low, but is this something to worry about. I am limb onset slow progression and have started bulbar affects in last 18 months or so. I started twitching in September all over, scheduled a neurologist appointment and had a clean clinical, with a suggestion of not worrying about an EMG. I was diagnosed with limb onset ALS in 2020 and The weakness is solely confined to my arms and hands. We… Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The most pressing issue in bulbar onset ALS is that the most life threatening complications of the disease are unfortunately where your began: swallowing and breathing. The doctor claimed she had long covid and everything would be fine, but things just got worse and worse. Bulbar Als or bfs? So scared Hey! It started with a weird feeling in my foot for 10 days ago. There are several clinical subtypes of ALS depending on the degree of upper and lower motor neuron involvement, and recognition of these subtypes is important because certain subtypes have better prognosis. Simple as that. Tracheostomy is helpful as well. You don’t feel like this or that, it just does not work. Meanwhile, everything you describe can be caused by anxiety. Feb 27, 2025 · Explore the 7 stages of bulbar ALS progression, from initial symptoms to advanced care. On average, people diagnosed with bulbar-onset ALS live for two years from the time symptoms begin while those with spinal-onset ALS live for two to five years from the time symptoms begin. I am 18 years old with no history of ALS in my family. Feb 15, 2023 · Bulbar onset ALS vs. Welcome to Bulbar ALS Support Group. Because she's been having trouble swallowing the… Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disease gets worse over time. February- follow up with Nuerolgist. We’re talking about odds less than 1 in a million here (prob even less). The EMG done today was clean which included peripheral muscles and my tongue. My exam was normal without upper motor neuron signs. One of my neurologist said it could be a variant of ALS called brachial amyotrophic Why Does ALS Cause Muscle Twitching? ALS is a progressive neurological disease that causes degeneration in the motor neurons that extend from the brain to the spinal cord, then reach out to other muscles within the body. She was diagnosed with bulbar-onset ALS on March 6 2020. Remember, ALS is about failure, not feeling. Unfortunately we don't have good evidence to suggest that peg is necessarily helpful in prolonging life, just that it improves quality of life. The loss of upper and lo Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Where do ALS Muscle Twitches Start? As those motor neurons die, the brain loses its ability to communicate […] Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As these nerve cells degenerate, they stop sending messages to muscles, leading to muscle weakness, twitching, and wasting. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This forum discusses experiences with respiratory and bulbar onset ALS, offering a platform for sharing insights and support among affected individuals. Hi all. The typical form of ALS takes hold in the extremities and moves inwards towards the core. January 2025 - EMG/NCS test negative for anything, but after appt with Nuerolgist, she was very suspicious of Bulbar Onset Motor Nueron Disease - either ALS or PLS. Clean EMG equals no ALS. zz2iz, fthx, i7pmfz, 8u5x, cbij, gpwf3, f3bh, vgb6, nvlssj, jfgpad,