I’m 27 and was diagnosed with ALS on August 18th, 2021. Overtime the disease really comes to light & makes daily living difficult. It’s really tough to live with honestly. I’ve lost a lot of weight, lost mostly all my strength, & my muscles atrophied a lot. I played college football & was healthy all my life but now I’m like a total different person. I don’t really notice myself when I look in the mirror. ALS really does strip you of everything..
Hello I can recommend you to use dr Omo herbal medicine very powerful and active it will help you get rid of them naturally my husband is pain free from ALS now after using dr Omo herbal medicine .
@@giacoanova I just noticed weird things going on with my body such as slowly losing weight, muscle, ability. This was in like 2019. I was like 170 pounds, a lot of muscle, very strong, very agile. I’m about 130 pounds now, very skinny, especially my arms. It’s difficult to even keep my arms up while doing things like texting.
What a devastating disease this is... My mom has been diagnosed with ALS this summer, it started with numbness in her right leg then it quickly moved to her arm, her other leg and arm aswell in just a couple of weeks. Now we're only three months later and she can't walk or even sit on her own anymore, last week she complained about how heavy her plate of food was dificult to lift, now this week even a cup of cofee is starting to be too heavy. And today... We noticed she started to have difficulties to speak, even her voice has changed. Our neurologist told us she has a really fast growing case of ALS... I decided to move back with her at home to help her as much as I can but having severe Haemophilia myself, it is really difficult to avoid bleeding in my joints when I lift her up a dozen times per day but I dont care about the pain, at some point it goes away. ALS wont go away unfortunately... Lots of thoughts to those diagnosed / or taking care of a close one with ALS, it's horrible :(
I'm so sorry for your mother. You're such a good daughter or son , for Moving with your mother to take Care of her. I don't know if you're a male or female. My heart goes to both of you. I will keep your on my prayers
Not in our case. Blew us completely off. Told my husband if he had ALS, Bedlack would be writing a book about him. He and Davenport diagnosed my husband with anxiety and depression. Didn't even listen to his lungs when my husband complained of difficulty breathing. If he had, maybe they could have stopped the pneumonia caused by choking that killed him 2 weeks later. Primary cause of death: pneumonia Secondary: ALS You can read my medical complaint regarding the neglect my husband suffered from these two "caring" people. Just feel people need to know the truth. All that glitters is not gold.
My ALS onset started with my right thumb cramping, then weeks later severe calf cramping. Quadriceps fasciculations were next, then hamstring muscle cramping & fasciculations. No weakness until 6 months later when my left ankle was noticeably weak. Inherited the C9orf72. My progression is slow. About to start a clinical trial that’s ASO based.
I'm sorry for your dx. if you don't mind, I just want to know about your fasciculations, because im feel twitching on my body to. So your twitch was uninterrupted? Or comes and goes? Is in your all body?
Very terrible disease, my mother passed away with ALS within 2 year of diagnosis. Things start with difficulty in speaking followed by muscle spasms within 2-3 months. And then with each passing day she was losing everything. At last stage she face difficulty in breathing and went on ventilator within 3 days. After that within a week she passed away. She was every thing to me. Never thought she will go like that. My family doctor Told me it is in family tree from my mother side. Because her grandfather was also died with ALS. I’m also fraking out today because I’m facing little twitching in my feet from pas 3 days.
My husband was diagnosed in September, he has slurred speech , he chokes on almost everything but his still walking and doing everything, am so worried about what is coming next , I can’t sleep and still can’t tell it to him as I don’t want him to get worried for both of us . My your mums soul keep Resting In peace . You may be safe , keep your head high
Stay away from Flouroquinolone antibiotics . Many who develop these horrible diseases get it due to taking certain forms of antibiotics and then we are lied to and told it's genetic . Look up flouroquinolone antibiotics and what they do to our mitochondria. This is not conspiracy , this is fact . FDA has multiple black box warnings on these drugs
You preserve muscles via minimal use. With ALS, the more the neurons are used or stimulated, the faster they burn out. Exercise does not prolong muscle mass with this disease. My Mom died from ALS 4 years ago this month. Heart breaking disease. :(
A cruel disease 😢 the more research and awareness will hopefully bring people and families together to one day find away to pause the condition enough to treat and heal those affected.
@@franklucas7891 I don't know. My mom was in her 60's when diagnosed & I suspect she had it for 18-24 months prior. Lower limb onset. For someone younger it would be worth a shot.
In our overmedicated world, I think it's important to note that muscle twitches/tremors are common if you are on or withdrawing from psychotropics. Especially antipsychotics are notorious for causing all kinds of movement and muscle problems, but ANY psychotropic can cause these. Just read the package insert.
Can THC edibles cause these kind of problems. I had took 450mg of THC edibles. After awhile I developed tremors, electric shock sensations, now twitching with muscular atrophy. What you think about this?
I'm 29, suffering from ALS. It's a cruel cruel disease. Life has been very challenging as of late. Only people who are suffering know it's pain. I don't know what we did deserve this. I cannot even afford a wheelchair to go anywhere.
I been to several doctors over the past 6 years and still undiagnosed. I've only had MRIs, cat scans and x-rays. Nothing out of the ordinary on my scans. My symptoms started with sharp stabing pains in abdominal and lower back with muscle spasms/twitching and inability to hold urine. Symptoms improved after a couple weeks. Twitching and sharp stabing pain however never went away. Then twitching ( sometimes contant spasms/hundreds a day) spread to my main torso, back, legs and arms over 6 years. Along with foot cramping. Constant mid/upperback pain and not sure how it started but gets extremely irritated and worse when laying on it. I get numbness and tingling in my arms and legs. Then about 2 years ago I got spasms in my ears which cause vertigo. Notice some weakness here and there but not Constant. Lots of tightness in traps/midback. Get super fatigued like I worked out for hours but didn't do anything (this mainly occurs in my neck and mid upper back). Involuntary finger movement begain about 2 years ago. Had two episodes where I could barley lift my head and couldnt drive because braking strained/fatigued my head to much. Then full arm and leg jerks/ Involuntary movement started this year. Now most recent I get a Constant lump in the throat feeling. New symptoms just seem to increase and progress overtime. I'm not sure what I have but definitely seems neurological. Looking to start seeing a neurologist again but so sick of no answers and being dismissed. Wish you all the best. Thanks for reading.
I am hoping and praying for your well being. I hope you get in touch with best neurologist and find out some answers that are manageable and cure able. Did you ever do an EMG?
@@headacheification thank you so much for your kindness. I have not had an EMG. I had an ekg and full blood work. Saw a neurologist he thought I had Ankylosing spondylitis but turned out negative. Wasnt very impressed they were very dismissive. Looking into going to John Hopkins it's about 2hrs from me they're supposeed to be some of the best. I know they will be able to find out what's going on. One of my issues is I feel like I already know what I have and it scares me. I know I'm not a doctor so hopefully they can give me a different answer. ALS is such a terrible disease that affects so many. It puzzles me that a cure hasnt been found or better treatment option. Looking into L serine. Again thank you it's at least nice to vent a little.
@@Kc-di7vj It's been 6 years since... Believe me, if you had ALS, you would be bedridden after at least 1 year. So you don't need to be afraid. I think your problem is with the spine. There is no numbness or tingling in ALS. I think your question is about the spine. There may be narrowing of the canal in the spine. Make an absolute MR of the spine
@@natiqmemmedli1650 thanks for your response and insight. I had a full mri of my spine (lower, mid and upper) and my brain. They said everything looked good. No narrowing or anything out of the ordinary. I feel like I have similar symptoms to ms but no legions or scar tissue popped up on my scans. I'm going to try a new neurologist at a better hospital and hope they can point me in the right direction. Thanks for reading
I injured a nerve in my left thigh 12 weeks ago, now i have fasciculations and what feels like deep (very fast but can't see them on the surface) fibrillarions (like very gentle rapid fire) in my left thigh, gluet, hamstrings and calf with now the occasional spasm (spasm more so when at rest). Now scared i won't see my beautiful 4 year old girl and 8 month old baby girl grow up. I felt a bit better when the doc said its rare twitches come first but instead weakness presents first but after seeing the comments i can see it's not too rare. Very scared.
I am very sorry for your situation and I hope that this is simply from your nerve injury. However, if you are still searching for answers, tr to find a doctor who actually listens to you. My husband's ALS started with cramps and muscle fasciculations. Because he was so physically strong, his weakening muscles did not register with our pathetic neurologists, the one doing this video and another one. They diagnosed him with anxiety and depression. Several other drs. asked if it wasn't ALS, but not the "experts" we had. I say all this to say that I have learned the extreme importance of being your own advocate. Keep fighting until someone listens and takes you seriously. Get the help and answers you need, especially for your children. Wishing the best for you.
I am at a crossroads of being concerned or not. My first visit to the neurologist she mentioned ALS, but said she thinks it's probably benign fasciculation. Okay...so even though I then looked up ALS, and was horrified, I decided maybe she accidentally spoke outloud before making sure it might be a possibility. I had an EMG, she found a little something, but still opted for BFS. After second EMG and increased fasciculations, she gave me options of larger research facilities for a second opinion as well as PT to increase lower strength. No MRI though, my last for my brain was years ago... Now I am concerned. If she thought it was benign why send me 4 hours away? Is that normal? Why not a fellow neurologist in her own office? It is very difficult not to research anything, especially now, and I have more questions than answers.
@@Tina-ku1ti Don’t panic! It could be anything from a vitamin deficiency, hormonal changes or spinal. ( which was my case) I had visible twitching in my feet and hands, it spread to other parts of my body and other troubling symptoms. I pretty much assumed the worst case scenario. ALS! My doctor didn’t think so but pretty much dismissed me as a hysterical peri menopausal hypochondria prone woman. ( the latter is true because there were no answers ). I saw another Dr, I felt did have cervical spine problems, I did have vitamin deficiencies ( b and D) and my hormones were going haywire. Btw, do some research on women experiencing twitching, numbness, electric shock sensations etc who are in perimenopause/menopause, it’s more common than you think.
@@jule3480 Yes, I'm hoping there's a logical explanation for the results of the EMG and weaknesses. I wrote that 2 months ago and am going to a University doctor in October. Hopefully PT will increase my strength issues. Thanks for responding, I do appreciate it.
I hope you’re doing ok. I have major health anxiety and have expressed concern over Als or ms. About 3 years ago I noticed my right foot went a little number and I noticed I was having constant faculations on the back of my calf’s. Fast forward to about 3 months ago, I decided to go to a family doctor who said it was nothing. The worst case scenario it would’ve been poly neuropathy because I wore boots all the time when working in construction. My EMGs also came back and said just one nerve in each of my legs was “slower” than what it’s supposed to be. I finally was referred to a neurologist because I would always feet for the worst. He didn’t an extremely fast and quick body check, did basic exercises and he also deemed it wasn’t serious and I don’t have to worry about it. However, I’ve had weakness in my right kneecap for a while, my thumbs on both hands get stiff (for a couple weeks they were numbish but it calmed down), and it seems as though I’ve lost a little bit of sensations with my hands. I also have the throat issue where it feels like something’s stuck when you eat, and my calf fascinations are constant. I’ve noticed since my neurologist visit a month ago that I sometimes get spur attic and random twitch’s across my whole body. I also experience poor balance and a little bit of arm weakness when I stretch them out, but nothing extreme. I’m just convinced I have the beginning stages but I really don’t know what to think.
Hello. If you are still concerned after seeing a general neurologist, you can search for a neurologist who specializes in ALS. You can search for ALS clinics here: www.youralsguide.com/als-clinics-directory.html. You can also trying contacting a local ALS organization (such as an ALS Association chapter) for recommendations and suggestions: www.youralsguide.com/support-services. Hope that helps.
Thanks for sharing. I have experienced similar symptoms for over three years. Numerous doctors have checked for ALS. My neurologist was especially concerned about this possibility. I have also been examined by physiotherapists, a chiropractor, a yoga therapist and an acupuncturist. Nobody has been willing to venture a guess as to what is wrong with me. How are you doing? Can you provide an update? Best regards.
I started with fasciculations in my right leg about 3 months ago. I had two spinal surgeries last year for Cauda equina, my right leg is the leg which was most effected. The twitching is now everywhere 24/7. Worse in right leg and left arm, both my right leg and left arm feels tight and cramps. My spinal team said its not my back. I also drop everything and lose my balance. My hand eye coordination is also gone. Hea referred me to a neurologist, im terrified 😢
@@Team920_ my fasciculations are exactly the same, I didn't get any answers. My right leg and bladder are the most effected from the Cauda equina. These fasciculations are horrible and are driving me absolutely nuts. I did see a locum doctor a few weeks ago who is the first doctor I've seen to say it's nerve related, I believe the same, I think it's peripheral neuropathy. I've had no weakness or atrophy so that's a good thing! Xx
It sadly takes 4 to 5 mo to get the first Dr appointment with neurology and if it is als that feels like lost time . I am concerned that it may be what I'm experiencing and I need help figuring this out .
I am so sorry for your experience. We had the same issue. Couldn't get an appointment for 4 months. Please make sure to advocate for yourself as our experience with Bedlack and Davenport who was at Duke was beyond ridiculous. They completely blew my husband off saying he had anxiety and depression. Didn't even listen to his lungs when he said he was having trouble breathing....7 days later in the hospital with severe pneumonia which killed him. No return calls when we begged for help. If you are able, please research other "unconventional" things that may at least slow the progression should you get that diagnosis. My thoughts are with you.
Hello doctor I have my left eye lid twitching from 3 months continuously and I feel muscle twitching over my body too? Do als affects face muscles too ? Like eyes ?
I think i have BFS, which at this point it doesnt bother me, but lately for the past month or two, the twitching has been happening in mainly my right thigh. Some days its really bad, some days it barely does it. And sometimes it even keeps me up at night. But it scares me because I know that in ALS the twitching usually originates in one spot. Has anyone else had this? Please respond and thank you!
ALS is not a disease of twitching, it’s a disease of failure…twitching is a result of the neurons dying, you would likely have significant weakness or atrophy coinciding with fasciculations. How are things now?
I have it in right thigh too.. twitching I mean... I do alot of heavy lifting at work and my lower back has spasms sometimes.. I don't think we have als issues
Hi there. My friend has ALS and not so long ago he gone through clinical death situation. His heart stopped beat and nevertheless he still managed to recover somehow. But for now he has high heart beat rate and he says that his kidney are in pain. Do you guys know anything about alpha and beta blockers for heart problems in patients with ALS? Or maybe there are others reasons for this problems ? You see the thing is that not many doctors can say something valuable for patient with ALS and i m kinda frustrated.
Drs. can't say much because every case is unique & there isn't much that can be done. An occupational therapist is very helpful as the patient will need to adapt their surroundings to the progressing loss of function. It boils down to adapting to change/loss. It's a HORRIBLE disease. My hearts breaks for anyone dealing with this.
I take mexiletine to help with the cramping. It is actually a heart medication. I was diagnosed with ALS in February. I have had symptoms for over a year now and have had 3 emgs, brain and neck scans and spinal tap. I hope mexiletine can help your friend. Monika
@@millyhnidey2522 may I ask what were your symptoms and what test gave you your als diagnosis? you mentioned you had 3 emgs were any of them normal then eventually ended up being abnormal?
I haven't had a spinal tap or EMG, I've only had an MRI and neurological exams with a reflex hammer, one doctor said to me that there was nothing neurological going on
So if you’re having fasciculations and your EMGs are normal, would that be sufficient in saying your fasciculations aren’t from a lower motor neuron lesion?
i am 56 yrs old and diagnosed with motor neuron disorder, i have been referred to another neurologist for second opinion, i have all the symptoms of als, mri's all testing ok, my right hand is very weak and twitching
My father started with his right leg and it went away then again it attacked he has his arms good but now he can’t speak well :/ we really don’t know how to deal with this and going through a difficult time :(
I am sorry to hear about your father. This disease is devastating. I hope some kind of hope and medical miracle be created soon to treat and wishing for his recovery.
sorry to hear that about your father. My father passed away with ALS few months ago. My suggestion is to be with him and try your best to take care of him as much as possible. That's all you can really do and make sure you remember and capture the moments you guys are together.
@@thewatchcollector007 Thank you yeah we try our best some days he feels okay some days he is all depressed. But at least he can eat now with less difficulty.
@@hhannde6 that’s good to hear, for my dad he was depressed for sure. we had to add the thickening powder, but that didn’t last long, he kept choking and lost all his appetite. I can tell what is happening to your family and everyday is basically in hell… this is what the disease is for the entire family. just want to say I’m with you and I know how you feel, you aren’t alone.
I have constant muscle twitching, hyperreflexia, neck and shoulder pain, excessive yawning and cramps, but all the doctors and neurologists said it definitely wasn't MND, and gave me a diagnosis of FND.
Been having twitching in my right thigh for a couple weeks now that’s gotten worse, occasional twitching in other muscles like my shoulders and even face. But not constant like my leg. Going to see a neurologist but they can’t get me in for a month
I’ve had twitching and atrophy for a few months with no weakness. Been worried but my emg only showed chronic cervical and lumbar radiculopathy back in April. I’ve gotten several opinions but I’m Still worried I Might’ve tested too early.
You’re good man, don’t stress…you probably have parsonage Turner syndrome. I imagine your tricep and forearm are twitching and the arm looks slightly smaller? Was there any significant pain in your neck or shoulder?
Hi All, I did EMG test in may because I was scared that I have ALS. My story I this year april I have taken the booster vaccin pfizer and 1 week later I went to my house doctor because I realized my left under leg was a biten swollen she had advise me to take inject ion clexane. After 3 days injection normally it was 10 my whole body feels very light but my weight stays the same till now. The EMG and blood results in may was normal. My symptoms are very light body , arms and legs Cold inside Spasmen, stiffness Something is melting away in body and returns into cold air None of the doctors can explain me already 8 month what I have. My whole getting lighter and lighter. Can they see ALS in bloodtest in the beginning and EMG? Is it a good idea to do the tests again?
I am concerned I have ALS - I have a lot of muscle twitching all over my body but only lasts seconds each time and I noticed I lost pain in my upper left shoulder- I’ve always had a lot of pain here and my lower back but all of a sudden, I can’t feel the pain anymore and when I stretch, I don’t feel my neck tendon or the stretch… I am very concerned. Did another lose feelings in a muscle? Like you lost pain that you used to have?
@@adrianseditz4168 doctor said that i had diagnosed with hirayama disease. There are confused b/w als and hirayama. What is the correct test for als diagnosis.
@@pradeepvayyeti Unfortately there isn't one that detects it early, but you can use a EMG which is a diagnostic procedure to assess the health of muscles and the nerve cells that control them
I got weekness in both leg so i did emng and mri of brain but they came normal. But still there is weekness in leg. What could be reason. And also recently i m getting musale twitching also... i don't know if i have als or no?
I have a lot of these symptoms and I’m scared that I have this :( I started getting swallowing problems like 2 months ago, which is why I have a ENT appointment in two weeks. (Sometimes I have no problems and it gets better, than it hurts again sometimes and I constantly feel a lump in my throat, I also feel like I have a lot of saliva in my mouth) I also noticed that I feel weakness in my legs and arms in general (sometimes u feel like even my head feels weird) and feel like I can’t really breathe well sometimes. Now my foot started pulsating or twitching (I don’t know what to really call it) and I don’t know what to do.. I googled my symptoms and I found ALS and now I’m so scared.. I’m only 20 years old and to get an appointment with an neurologist is gonna take like 2 months..
I m just 24....and my both legs becomes little weak and little pain in muscle while walking or something without pain, mostly without pain, which affects coordination of my walking from last 2 months...All the time I worry that it's a ALS
@@FEXAZb I suggest you not to go doctor if it's not going worse..... Don't believe in these things..........this disease is like finding a very small coin in big football field stadium......
❤️HEALTH UPDATE: My Jan 12th 2022 Iowa City Neurology visit has had both amazing results and yet mind boggling disappointments! Only recently did I read all the results, on the papers given to me from Iowa City ( after looking for the date / time for the next appointment and realizing that I had not been given new appointment date ) and this, even after expressing my concerns about my recent near death experience on Jan 2nd, ( ? ) * On 1-2-2022 - I went from feeling fine to all the bulbar onset symptoms attacking at once, as well as my central nervous system short circuiting, to where my body temperature, heart beat, blood pressure, breathing, inability to talk, drooling, w/ extreme nausea, cardiovascular, etc, all were greatly effected at once, which overwhelmed me, and to where I needed E.M.T.’s, an Ambulance ride and spent a few hours in the local hospital E.R. 1.) I have steadily reversed the symptoms of A.L.S. to the point that, now, they are officially stating that I don’t have A.L.S.!! WOOHOO, RIGHT? ( No, not exactly. ) 2.) I’ve proven that it’s my Central Nervous System that’s short circuiting, and that most of my additional symptoms are not from ALS, that this latest near death experience, and most of the others, as most of these bodily malfunctions come from the neck, of which after my major neck surgery on August 7th, 2018, I never regained my strength. 3.) Dr Nance ( Iowa City Neurology ) He expressed his thoughts with me, as being: It’s not that they screwed up my neck surgery but that the neck surgery stopped further damage” ( in his mind, that my having an extremely high tolerance to pain had allowed my nerves to be damaged as I waited for years after discovering I had 5 swollen discs and 3 pinched nerves in my neck, ( approximately 20011 / 2012 ) and because I didn’t have the neck surgery until Aug 2018. 4.) According to him my neck surgery is why I’m healing but if this is his analogy/ his theory, then …Q: Why have I recently had the worst near death experience ever? 5.) And another …Q: Why has he made my next appointment over 6 months away? ( And he did so, after I openly expressed my concerns, that my life is in more danger now, than ever before? ) 6.) I let my thoughts be known, to the woman I spoke with on the phone in Iowa City - that I won’t live 6 months, if steps aren’t taken ASAP to find out what’s causing my central nervous system to go haywire!! 7.) So, When I called Iowa City Neurology, I gave my concerns, my complaints, requested another Lyme disease test, and I asked for them to give me a referral to see a different neurologist, as I view mine as incompetent and uncaring, so Iowa City is sending me papers to sign, which will give my new Neurologist permission to view my medical records from Iowa City, Neurology, speech therapy, physical therapy, etc, etc 8.) An up-to-date on my recent / current / ongoing symptoms, which are off / on, are: 9.) Breathing issues - different body positions effect lung capacity, lungs range from barely opening to opening more than usual, fully or nearly full capacity. 10.) Cardiovascular- Was previously, steadily improving and doing great, blood vessels were clearly visible & bulging, reminded me of how they use to look when I worked out. ( In feet & hands only ) - Now, however, cardiovascular is suffering, it varies a lot, mostly with blood vessels either barely seen or not visible at all, which gets worse, occurs when I have breathing issues, which is common, now it’s an every day occurrence again, … - so I’ve laid off most of the supplements and started consuming more nutrients from natural sources, started consuming more foods, and fasting less. 11.) Mild Heart Palpitations / Skips A Beat / Or Beats Fast Momentarily - Even when at rest. ( Breathing is effected simultaneously when this occurs. ) - I’ve had these problems before, now they’re back and they’re worse. 12.) Speech - On September 24th, I regained my normal voice back, again, for the first time in a long time, although it still comes & goes, I have it less & less now, and it varies greatly, my voice is still not as bad as it used to be. I remember well what it was like to not be able to talk at all so I’m very grateful that I’m still able to talk. 👍 13.) Walking - I’m still walking, w/ out assistance but only short distances. Legs are still stable, at times shaky, like before but now I’m stronger than all previous tests. 👍 14.) Body Is No Longer Rigid - I Can Touch My Toes/ Trim My Own Nails - 15.) Ankles & Hands No Longer Ache When I Bend Them - 16.) I Recently discovered that I can once again lay flat on my back without discomfort, and without it causing breathing difficulties!! ( This is the first time in many years that I’ve been able to lay / sleep flat on my back ) 👍 16.) Body Temp Issues - Hot / Cold - As before, these symptoms have returned, daily. 17.) Hand Strength Has Returned ( can pick up a chair again with left hand ) - Although Hand strength varies, I can tell that most of the time it’s stronger than it’s been since my 10-7-2018 neck surgery- 18.) Started recently ( mainly ) having discomfort / aches & pains at the base of my skull, from backside of one ear clear across to the other side as well as in my neck, head, shoulders, and shoulder blade areas although they’re brief, they’re becoming more often. - Going to make a chiropractor appointment just to make sure my body is in correct alignment. 19.) Started recently having more fasciculations ( involuntary muscle twitches ) again, in both left & right legs, as well as mainly right hand but also the left. 20.) Muscle wasting continues - I used to have muscular 16” arms, now I’m guessing they’re about 10”. ( * but some muscles have gained strength over the past 3 years, for example: 3+ years ago my left hand could barely lift a pillow, whereas most days now, my left hand can lift a chair ) 21.) I’ve spent most of the past 2+ years finding out which foods heal / strengthen and detox the body, as well as how to read labels, learn which foods to avoid, as well as studying biochemistry and more recently, added neuroscience, in order to do what Dr.’s said is impossible: my staying alive!! 22.) There are many MND’s ( Motor Neuron Diseases ) and many illnesses which effect the Central Nervous System. If you’re aware of what I could do or take which would help me, please, I need all the help I can get, as so far, my neurologists haven’t helped one iota!! - So far, it’s been my desire to live, and my own extensive non-stop searching ( on UA-cam ) to which I’ve gained enough knowledge to carry myself this far, ( nutrition ) which has enabled me not only to stay alive but also to walk and talk, again!! ( TY, GOD!! ) but the battle is not over. I could use a few more prayers. Prayers Matter!! 🙏⚡️
Insanely anxious. I have had some muscle twitches, first in my left shoulder the alternating between both legs, sometimes at the same time. And over the last 36 hours, my left leg has felt weak and sore. Almost like a growing pain or I had exercised hard the day before (I didn’t). What are the chances this is ALS?
Charles, Thank you for reaching out. Keep in mind that just because you are experiencing some symptoms does not mean you have ALS! Dr. Bedlack cannot answer your question directly, but we recommend making an appointment to see a neurologist. You will likely need to make an appointment with your primary care physician and explain your symptoms first. They may run their own tests, or you can ask to be referred to a neurologist, who will run tests to rule things out and these will help them tell you what may be going on with the twitching and pain. If there are still concerns, you can search for a neurologist who specializes in ALS on our ALS Clinics Directory at www.youralsguide.com/als-clinics. It might also be helpful to learn more about ALS symptoms, diagnosis, and more at www.youralsguide.com/about-als. We hope this helps, Your ALS Guide
@@YourALSGuide I been having ALS symptoms for a long time now a year this month I had three EMG last came back with carpal tunnel mild I been to the doctor every month twice month the muscle twitching is worst has moved to my face, hands feel light, sometimes tremors or jerks happen and I’m always in a lot of pain. I see different in my muscles but my weight not moving
@Ansh Bawa still have symptoms and still going to to doctors I have an appointment aug 11 this is the worst experience in my life I’m 34 years old I’m very depressed and miserable
@@ticklemebitch1 I’m sorry to hear that. I’ve been having the muscle twitching for about six months and my fingers, legs, arms will jerk sometimes as I’m falling asleep. It comes and goes. Sometimes I don’t have it for days and then it’s nonstop for a week. Im pretty freaked out to be honest. I really hope things get better for you. Really makes you think about your mortality. I just turned 33
@@mclovinlife4018 yes I just had my first kid I’m so scared I been going to the doctors for a year and half now two to three appointments a month they say no to Als but I’m scared they wrong
Hello everyone. We filmed Dr. Bedlack on a variety of topics for Your ALS Guide. Unfortunately, he does not have time to answer individual questions outside of his clinic. You can learn more about ALS symptoms at www.youralsguide.com/early-als-symptoms. If you are concerned you might have ALS, or need support after your diagnosis, you can search for ALS clinics at www.youralsguide.com/als-clinics and support service organizations at www.youralsguide.com/support-services to connect with ALS neurologists and professionals near you. We also have a comprehensive Newly Diagnosed Guide at www.youralsguide.com/newly-diagnosed. Hope that helps! Please note that this video is for educational purposes only. Medical advice can only come from your treating physician.
Hello! Is there something particular about muscle twitching in ALS compared to benigne muscle twitching? Like duration/ frequence/ localisation? Thank you!
@@gtgt3928 thank you for reply! I cannot really objectify my simptoms, it feels like a weakness in calves, but each day is localised in the other one. And fasciculations happen maybe 20-30 times/day in different parts of the body but they do not last more that 2-3 seconds... i hope that being only 29 years old the chances are extremly small...
@@Cangurul0921 I wouldnt worry too much. I have had twitching daily for the last 14 months. Could be in my thumb one day, legs the next, Shoulders the next. They will twitch for 20 seconds at a time also. I've had 3x Emgs and nothing found. How long have u had the twitching?
@@gtgt3928 did u have an full EMG ( 4 different body regions)? Did your neurologist said u should repeat it? I took my fist EMG and was normal but unfortunately I had to found out that it was incomplete because it had tested only the calves...
Is there a timeframe after twitcing starts when you can say its bfs, i got twitches for allmost 4 years now, and at the moment since 2 weeks i have micro cramping all over my body, could this still be a form of als?
Hi sir I diagnose recently als with sod1 gean I have strong fammly history all my family members died 1 year I am woorid about is new gean tharpy available in Australia plase any where help me
I too have trouble breathing sometimes. It is a horrible feeling. I also have muscle twitches and dull, short lasting pains all over my body, mainly in the joints. Diagnosed with general anxiety and moderate depression. Anxiety can also cause breathing problems. Also, when im anxious about these symptoms, I tend to focus on them more, and they get amplified. Not a good coctail to have. Hope you'll feel better soon.
What makes you anxious? For me it is primarily health anxiety. If i read about diseases or disorders, I'm almost 100% certain I have those disorders. Also the thought of being anxious or having a panic attack makes me anxious. At worst I couldn't leave the house without a panic attack because I was so afraid of having one. The trick that did it for me is to take control of the situation as best as I can and force myself to go towards these fears. Getting some exposure at my own pace. At times I needed the help of my friends with this. Just watching over me as I did it so I wouldnt die. Its a bit embarassing since im 33 but it had a positive effect. In time the brain will realize that having a panic attack wont kill me, and it simply stopped producing them... When new, scary things arise, I have to do that battle all over again. it could last for weeks or months.... My latest Demon is my bed. I'm super scared of not getting any sleep. That fear is often preventing me from sleeping. So now I'm getting used to not sleeping, so that the fear of not sleeping will slowly disappear. The progress is slow and there are bad days and good days.
No, it is not…twitching is a result of neurons dying, you would likely have significant symptoms of clinical weakness and wasting. Clinical weakness is not a feeling, it’s complete failure to perform a task with a particular appendage or muscle group. Feeling weak is much different then being weak.
Hey sabri how you doing? Most probably you have already looked this up but twitching is rarely a first symptom, if it was it should also be running pararel with lack of strength and loss of function
@@corinnastark713 Functional impairment is typically distal in ALS (it starts with the hands/feet). It can be proximal (shoulders/hips) in rare cases, but other diagnoses should be considered first. Talk to your doctor.
I’m 27 and was diagnosed with ALS on August 18th, 2021. Overtime the disease really comes to light & makes daily living difficult. It’s really tough to live with honestly. I’ve lost a lot of weight, lost mostly all my strength, & my muscles atrophied a lot. I played college football & was healthy all my life but now I’m like a total different person. I don’t really notice myself when I look in the mirror. ALS really does strip you of everything..
I'm so sorry to hear that. How did your symptoms start?
Hello I can recommend you to use dr Omo herbal medicine very powerful and active it will help you get rid of them naturally my husband is pain free from ALS now after using dr Omo herbal medicine .
*virtual hugs.. Be strong.
@@giacoanova I just noticed weird things going on with my body such as slowly losing weight, muscle, ability. This was in like 2019. I was like 170 pounds, a lot of muscle, very strong, very agile. I’m about 130 pounds now, very skinny, especially my arms. It’s difficult to even keep my arms up while doing things like texting.
How fast is the progression?
What a devastating disease this is... My mom has been diagnosed with ALS this summer, it started with numbness in her right leg then it quickly moved to her arm, her other leg and arm aswell in just a couple of weeks. Now we're only three months later and she can't walk or even sit on her own anymore, last week she complained about how heavy her plate of food was dificult to lift, now this week even a cup of cofee is starting to be too heavy. And today... We noticed she started to have difficulties to speak, even her voice has changed. Our neurologist told us she has a really fast growing case of ALS...
I decided to move back with her at home to help her as much as I can but having severe Haemophilia myself, it is really difficult to avoid bleeding in my joints when I lift her up a dozen times per day but I dont care about the pain, at some point it goes away. ALS wont go away unfortunately...
Lots of thoughts to those diagnosed / or taking care of a close one with ALS, it's horrible :(
I'm so sorry for your mother. You're such a good daughter or son , for Moving with your mother to take Care of her. I don't know if you're a male or female. My heart goes to both of you. I will keep your on my prayers
I pray you’re well
As the comments above, my heart & prayers goes out to u both.
Can you get help from your local ALS chapter?
Hard to explain how obvious it is that this very doctor actually CARES for his patients. Inspirational man.
Not in our case. Blew us completely off. Told my husband if he had ALS, Bedlack would be writing a book about him. He and Davenport diagnosed my husband with anxiety and depression. Didn't even listen to his lungs when my husband complained of difficulty breathing. If he had, maybe they could have stopped the pneumonia caused by choking that killed him 2 weeks later. Primary cause of death: pneumonia Secondary: ALS
You can read my medical complaint regarding the neglect my husband suffered from these two "caring" people. Just feel people need to know the truth. All that glitters is not gold.
Thank you for all you do in the ALS space. I wish I had known you back when my father was diagnosed.
So sorry to hear about your father . How is he doing these days
My ALS onset started with my right thumb cramping, then weeks later severe calf cramping. Quadriceps fasciculations were next, then hamstring muscle cramping & fasciculations. No weakness until 6 months later when my left ankle was noticeably weak. Inherited the C9orf72. My progression is slow. About to start a clinical trial that’s ASO based.
I'm sorry for your dx. if you don't mind, I just want to know about your fasciculations, because im feel twitching on my body to. So your twitch was uninterrupted? Or comes and goes? Is in your all body?
@@MozertNerywhat about your twitching I am also facing this
How are u now brother
Did you have lhermitte sign ?
Very terrible disease, my mother passed away with ALS within 2 year of diagnosis. Things start with difficulty in speaking followed by muscle spasms within 2-3 months. And then with each passing day she was losing everything. At last stage she face difficulty in breathing and went on ventilator within 3 days. After that within a week she passed away. She was every thing to me. Never thought she will go like that.
My family doctor Told me it is in family tree from my mother side. Because her grandfather was also died with ALS.
I’m also fraking out today because I’m facing little twitching in my feet from pas 3 days.
My husband was diagnosed in September, he has slurred speech , he chokes on almost everything but his still walking and doing everything, am so worried about what is coming next , I can’t sleep and still can’t tell it to him as I don’t want him to get worried for both of us .
My your mums soul keep Resting In peace . You may be safe , keep your head high
So sorry to heard that. May God help you and your husband. Best wishes for you guys.
I'm so sorry for your mother. I Can imagine your pain, because my mother is my life. I can't imagine losing her or seeing her sick.
@@Raees660how are u now brother
Stay away from Flouroquinolone antibiotics . Many who develop these horrible diseases get it due to taking certain forms of antibiotics and then we are lied to and told it's genetic . Look up flouroquinolone antibiotics and what they do to our mitochondria. This is not conspiracy , this is fact . FDA has multiple black box warnings on these drugs
Really important to get it diagnosed as early as possible so that you can attempt to preserve muscle mass as much as possible
You preserve muscles via minimal use. With ALS, the more the neurons are used or stimulated, the faster they burn out. Exercise does not prolong muscle mass with this disease. My Mom died from ALS 4 years ago this month. Heart breaking disease. :(
A cruel disease 😢 the more research and awareness will hopefully bring people and families together to one day find away to pause the condition enough to treat and heal those affected.
@@kristitrimble9658 what if someone take steroids and lifts weights will that prolong muscle atrophy?
@@franklucas7891 I don't know. My mom was in her 60's when diagnosed & I suspect she had it for 18-24 months prior. Lower limb onset. For someone younger it would be worth a shot.
@@kristitrimble9658 I’m very sorry yo hear about that ! May I ask what were her symptoms in the beginning?
I started feeling spasms today on my tongue, it even hurts under my tongue like if I’ve been talking for too long. My jaw feels sore
In our overmedicated world, I think it's important to note that muscle twitches/tremors are common if you are on or withdrawing from psychotropics. Especially antipsychotics are notorious for causing all kinds of movement and muscle problems, but ANY psychotropic can cause these. Just read the package insert.
Can THC edibles cause these kind of problems. I had took 450mg of THC edibles. After awhile I developed tremors, electric shock sensations, now twitching with muscular atrophy. What you think about this?
I'm 29, suffering from ALS. It's a cruel cruel disease. Life has been very challenging as of late. Only people who are suffering know it's pain. I don't know what we did deserve this.
I cannot even afford a wheelchair to go anywhere.
Does ALS cause nerve damage in legs or arms? My Nerve conductivity study revealed axonal nerve damage in my left leg.
I have twitching in my abdomen area bad and spreading. I’m praying I’m very scared honestly
I been to several doctors over the past 6 years and still undiagnosed. I've only had MRIs, cat scans and x-rays. Nothing out of the ordinary on my scans. My symptoms started with sharp stabing pains in abdominal and lower back with muscle spasms/twitching and inability to hold urine. Symptoms improved after a couple weeks. Twitching and sharp stabing pain however never went away. Then twitching ( sometimes contant spasms/hundreds a day) spread to my main torso, back, legs and arms over 6 years. Along with foot cramping. Constant mid/upperback pain and not sure how it started but gets extremely irritated and worse when laying on it. I get numbness and tingling in my arms and legs. Then about 2 years ago I got spasms in my ears which cause vertigo. Notice some weakness here and there but not Constant. Lots of tightness in traps/midback. Get super fatigued like I worked out for hours but didn't do anything (this mainly occurs in my neck and mid upper back). Involuntary finger movement begain about 2 years ago. Had two episodes where I could barley lift my head and couldnt drive because braking strained/fatigued my head to much. Then full arm and leg jerks/ Involuntary movement started this year. Now most recent I get a Constant lump in the throat feeling. New symptoms just seem to increase and progress overtime. I'm not sure what I have but definitely seems neurological. Looking to start seeing a neurologist again but so sick of no answers and being dismissed. Wish you all the best. Thanks for reading.
I am hoping and praying for your well being. I hope you get in touch with best neurologist and find out some answers that are manageable and cure able. Did you ever do an EMG?
@@headacheification thank you so much for your kindness. I have not had an EMG. I had an ekg and full blood work. Saw a neurologist he thought I had Ankylosing spondylitis but turned out negative. Wasnt very impressed they were very dismissive. Looking into going to John Hopkins it's about 2hrs from me they're supposeed to be some of the best. I know they will be able to find out what's going on. One of my issues is I feel like I already know what I have and it scares me. I know I'm not a doctor so hopefully they can give me a different answer. ALS is such a terrible disease that affects so many. It puzzles me that a cure hasnt been found or better treatment option. Looking into L serine. Again thank you it's at least nice to vent a little.
@@Kc-di7vj It's been 6 years since... Believe me, if you had ALS, you would be bedridden after at least 1 year. So you don't need to be afraid. I think your problem is with the spine. There is no numbness or tingling in ALS. I think your question is about the spine. There may be narrowing of the canal in the spine. Make an absolute MR of the spine
Sounds like Benign Fasciculation Syndrome.
@@natiqmemmedli1650 thanks for your response and insight. I had a full mri of my spine (lower, mid and upper) and my brain. They said everything looked good. No narrowing or anything out of the ordinary. I feel like I have similar symptoms to ms but no legions or scar tissue popped up on my scans. I'm going to try a new neurologist at a better hospital and hope they can point me in the right direction. Thanks for reading
Does
Cervical sponlitic Myelopathy become as bad as ALS?
I injured a nerve in my left thigh 12 weeks ago, now i have fasciculations and what feels like deep (very fast but can't see them on the surface) fibrillarions (like very gentle rapid fire) in my left thigh, gluet, hamstrings and calf with now the occasional spasm (spasm more so when at rest). Now scared i won't see my beautiful 4 year old girl and 8 month old baby girl grow up. I felt a bit better when the doc said its rare twitches come first but instead weakness presents first but after seeing the comments i can see it's not too rare. Very scared.
I am very sorry for your situation and I hope that this is simply from your nerve injury. However, if you are still searching for answers, tr to find a doctor who actually listens to you. My husband's ALS started with cramps and muscle fasciculations. Because he was so physically strong, his weakening muscles did not register with our pathetic neurologists, the one doing this video and another one. They diagnosed him with anxiety and depression. Several other drs. asked if it wasn't ALS, but not the "experts" we had. I say all this to say that I have learned the extreme importance of being your own advocate. Keep fighting until someone listens and takes you seriously. Get the help and answers you need, especially for your children. Wishing the best for you.
I am at a crossroads of being concerned or not. My first visit to the neurologist she mentioned ALS, but said she thinks it's probably benign fasciculation. Okay...so even though I then looked up ALS, and was horrified, I decided maybe she accidentally spoke outloud before making sure it might be a possibility. I had an EMG, she found a little something, but still opted for BFS. After second EMG and increased fasciculations, she gave me options of larger research facilities for a second opinion as well as PT to increase lower strength. No MRI though, my last for my brain was years ago... Now I am concerned. If she thought it was benign why send me 4 hours away? Is that normal? Why not a fellow neurologist in her own office? It is very difficult not to research anything, especially now, and I have more questions than answers.
Do you suffer from anxiety?
@@27mixon not normally.
@@Tina-ku1ti Don’t panic! It could be anything from a vitamin deficiency, hormonal changes or spinal. ( which was my case)
I had visible twitching in my feet and hands, it spread to other parts of my body and other troubling symptoms. I pretty much assumed the worst case scenario. ALS!
My doctor didn’t think so but pretty much dismissed me as a hysterical peri menopausal hypochondria prone woman. ( the latter is true because there were no answers ).
I saw another Dr, I felt did have cervical spine problems, I did have vitamin deficiencies ( b and D) and my hormones were going haywire.
Btw, do some research on women experiencing twitching, numbness, electric shock sensations etc who are in perimenopause/menopause, it’s more common than you think.
@@jule3480 Yes, I'm hoping there's a logical explanation for the results of the EMG and weaknesses. I wrote that 2 months ago and am going to a University doctor in October. Hopefully PT will increase my strength issues. Thanks for responding, I do appreciate it.
I hope you’re doing ok. I have major health anxiety and have expressed concern over Als or ms. About 3 years ago I noticed my right foot went a little number and I noticed I was having constant faculations on the back of my calf’s. Fast forward to about 3 months ago, I decided to go to a family doctor who said it was nothing. The worst case scenario it would’ve been poly neuropathy because I wore boots all the time when working in construction. My EMGs also came back and said just one nerve in each of my legs was “slower” than what it’s supposed to be. I finally was referred to a neurologist because I would always feet for the worst. He didn’t an extremely fast and quick body check, did basic exercises and he also deemed it wasn’t serious and I don’t have to worry about it. However, I’ve had weakness in my right kneecap for a while, my thumbs on both hands get stiff (for a couple weeks they were numbish but it calmed down), and it seems as though I’ve lost a little bit of sensations with my hands. I also have the throat issue where it feels like something’s stuck when you eat, and my calf fascinations are constant. I’ve noticed since my neurologist visit a month ago that I sometimes get spur attic and random twitch’s across my whole body. I also experience poor balance and a little bit of arm weakness when I stretch them out, but nothing extreme. I’m just convinced I have the beginning stages but I really don’t know what to think.
Hello. If you are still concerned after seeing a general neurologist, you can search for a neurologist who specializes in ALS. You can search for ALS clinics here: www.youralsguide.com/als-clinics-directory.html. You can also trying contacting a local ALS organization (such as an ALS Association chapter) for recommendations and suggestions: www.youralsguide.com/support-services. Hope that helps.
Thanks for sharing. I have experienced similar symptoms for over three years. Numerous doctors have checked for ALS. My neurologist was especially concerned about this possibility. I have also been examined by physiotherapists, a chiropractor, a yoga therapist and an acupuncturist. Nobody has been willing to venture a guess as to what is wrong with me. How are you doing? Can you provide an update? Best regards.
Your symptoms are pretty common for alot of people likely not als
how you been doing?
How are you @Supoz
I started with fasciculations in my right leg about 3 months ago. I had two spinal surgeries last year for Cauda equina, my right leg is the leg which was most effected. The twitching is now everywhere 24/7. Worse in right leg and left arm, both my right leg and left arm feels tight and cramps. My spinal team said its not my back. I also drop everything and lose my balance. My hand eye coordination is also gone. Hea referred me to a neurologist, im terrified 😢
Hi Dear Did you get test done? And what the result ??
I hope you are okay
What result come hope you fine
How did things go ? I hope all is well
@@Team920_ my fasciculations are exactly the same, I didn't get any answers. My right leg and bladder are the most effected from the Cauda equina. These fasciculations are horrible and are driving me absolutely nuts. I did see a locum doctor a few weeks ago who is the first doctor I've seen to say it's nerve related, I believe the same, I think it's peripheral neuropathy. I've had no weakness or atrophy so that's a good thing! Xx
It sadly takes 4 to 5 mo to get the first Dr appointment with neurology and if it is als that feels like lost time . I am concerned that it may be what I'm experiencing and I need help figuring this out .
I mean, there’s nothing you can do about this disease. What difference would it make if you could see a doctor earlier?
I am so sorry for your experience. We had the same issue. Couldn't get an appointment for 4 months. Please make sure to advocate for yourself as our experience with Bedlack and Davenport who was at Duke was beyond ridiculous. They completely blew my husband off saying he had anxiety and depression. Didn't even listen to his lungs when he said he was having trouble breathing....7 days later in the hospital with severe pneumonia which killed him. No return calls when we begged for help.
If you are able, please research other "unconventional" things that may at least slow the progression should you get that diagnosis. My thoughts are with you.
Hello doctor I have my left eye lid twitching from 3 months continuously and I feel muscle twitching over my body too? Do als affects face muscles too ? Like eyes ?
Check with a chiropractor..you may need your spine aligned. It may help my dear. Take care❤
I think i have BFS, which at this point it doesnt bother me, but lately for the past month or two, the twitching has been happening in mainly my right thigh. Some days its really bad, some days it barely does it. And sometimes it even keeps me up at night. But it scares me because I know that in ALS the twitching usually originates in one spot. Has anyone else had this? Please respond and thank you!
ALS is not a disease of twitching, it’s a disease of failure…twitching is a result of the neurons dying, you would likely have significant weakness or atrophy coinciding with fasciculations.
How are things now?
@@Midwest_Hunt hii i fear the same thing now could you reply now
I have it in right thigh too.. twitching I mean... I do alot of heavy lifting at work and my lower back has spasms sometimes.. I don't think we have als issues
Hi there. My friend has ALS and not so long ago he gone through clinical death situation. His heart stopped beat and nevertheless he still managed to recover somehow. But for now he has high heart beat rate and he says that his kidney are in pain. Do you guys know anything about alpha and beta blockers for heart problems in patients with ALS? Or maybe there are others reasons for this problems ? You see the thing is that not many doctors can say something valuable for patient with ALS and i m kinda frustrated.
Drs. can't say much because every case is unique & there isn't much that can be done. An occupational therapist is very helpful as the patient will need to adapt their surroundings to the progressing loss of function. It boils down to adapting to change/loss. It's a HORRIBLE disease. My hearts breaks for anyone dealing with this.
I take mexiletine to help with the cramping. It is actually a heart medication. I was diagnosed with ALS in February. I have had symptoms for over a year now and have had 3 emgs, brain and neck scans and spinal tap. I hope mexiletine can help your friend.
Monika
@@millyhnidey2522 may I ask what were your symptoms and what test gave you your als diagnosis? you mentioned you had 3 emgs were any of them normal then eventually ended up being abnormal?
I'm not understanding what you mean about beta blockers ?
My dear brother, is your friend sure that he does not suffer from hyperthyroidism?!
I haven't had a spinal tap or EMG, I've only had an MRI and neurological exams with a reflex hammer, one doctor said to me that there was nothing neurological going on
So if you’re having fasciculations and your EMGs are normal, would that be sufficient in saying your fasciculations aren’t from a lower motor neuron lesion?
i am 56 yrs old and diagnosed with motor neuron disorder, i have been referred to another neurologist for second opinion, i have all the symptoms of als, mri's all testing ok, my right hand is very weak and twitching
My father started with his right leg and it went away then again it attacked he has his arms good but now he can’t speak well :/ we really don’t know how to deal with this and going through a difficult time :(
I am sorry to hear about your father. This disease is devastating. I hope some kind of hope and medical miracle be created soon to treat and wishing for his recovery.
@@headacheification thank you :(
sorry to hear that about your father. My father passed away with ALS few months ago. My suggestion is to be with him and try your best to take care of him as much as possible. That's all you can really do and make sure you remember and capture the moments you guys are together.
@@thewatchcollector007 Thank you yeah we try our best some days he feels okay some days he is all depressed. But at least he can eat now with less difficulty.
@@hhannde6 that’s good to hear, for my dad he was depressed for sure. we had to add the thickening powder, but that didn’t last long, he kept choking and lost all his appetite. I can tell what is happening to your family and everyday is basically in hell… this is what the disease is for the entire family. just want to say I’m with you and I know how you feel, you aren’t alone.
I have constant muscle twitching, hyperreflexia, neck and shoulder pain, excessive yawning and cramps, but all the doctors and neurologists said it definitely wasn't MND, and gave me a diagnosis of FND.
Hi mate, we have very similar symptoms, how are you feeling now?
I'm fine now thanks mate, it comes and goes.
I have all ALS symptoms but muscle test was good...can it still be ALS ?
Could infected with covid cause ALS?
Been having twitching in my right thigh for a couple weeks now that’s gotten worse, occasional twitching in other muscles like my shoulders and even face. But not constant like my leg. Going to see a neurologist but they can’t get me in for a month
What are they saying?
Did you get twitches after vaccine ?
Any updates
I’ve had twitching and atrophy for a few months with no weakness. Been worried but my emg only showed chronic cervical and lumbar radiculopathy back in April. I’ve gotten several opinions but I’m
Still worried I
Might’ve tested too early.
You’re good man, don’t stress…you probably have parsonage Turner syndrome.
I imagine your tricep and forearm are twitching and the arm looks slightly smaller?
Was there any significant pain in your neck or shoulder?
So sorry you had to go through this. Any update on your subsequent tests?
Hi All,
I did EMG test in may because I was scared that I have ALS.
My story I this year april I have taken the booster vaccin pfizer and 1 week later I went to my house doctor because I realized my left under leg was a biten swollen she had advise me to take inject ion clexane.
After 3 days injection normally it was 10 my whole body feels very light but my weight stays the same till now.
The EMG and blood results in may was normal.
My symptoms are very light body , arms and legs
Cold inside
Spasmen, stiffness
Something is melting away in body and returns into cold air
None of the doctors can explain me already 8 month what I have.
My whole getting lighter and lighter.
Can they see ALS in bloodtest in the beginning and EMG?
Is it a good idea to do the tests again?
how are you now?
By the way i have numness im my feet and legs im told this from neuropathy but i fall alot and my balance is bad
And i turn 71 in April next year
Doc what are the chances of a 15-16 year old getting ALS starting with muscle twitching and not weakness?
Ur fine bro. Get off google
How r u now plllllzzz pllllzzzzz reply
@@sumeenahmed5099 I’m fine I think
@@MrNononoah exactly 😂and just drink some magnesium powder you will be alright
@@kevinthepony9321 Does the twitching started after vaccine ?
I am concerned I have ALS - I have a lot of muscle twitching all over my body but only lasts seconds each time and I noticed I lost pain in my upper left shoulder- I’ve always had a lot of pain here and my lower back but all of a sudden, I can’t feel the pain anymore and when I stretch, I don’t feel my neck tendon or the stretch… I am very concerned. Did another lose feelings in a muscle? Like you lost pain that you used to have?
How are you feeling now ?
I got diagnosis with als. Can any one please suggest diet plan for me?
Try glutathione, very good at repairing dead cells
@@adrianseditz4168 thank you friend
@@pradeepvayyeti How have you been feeling? Copper is also good for creating new blood vessel formation
@@adrianseditz4168 doctor said that i had diagnosed with hirayama disease. There are confused b/w als and hirayama. What is the correct test for als diagnosis.
@@pradeepvayyeti Unfortately there isn't one that detects it early, but you can use a EMG which is a diagnostic procedure to assess the health of muscles and the nerve cells that control them
I got weekness in both leg so i did emng and mri of brain but they came normal. But still there is weekness in leg. What could be reason. And also recently i m getting musale twitching also... i don't know if i have als or no?
No, you have nothing, take care of your anxiety
I have a lot of these symptoms and I’m scared that I have this :( I started getting swallowing problems like 2 months ago, which is why I have a ENT appointment in two weeks. (Sometimes I have no problems and it gets better, than it hurts again sometimes and I constantly feel a lump in my throat, I also feel like I have a lot of saliva in my mouth) I also noticed that I feel weakness in my legs and arms in general (sometimes u feel like even my head feels weird) and feel like I can’t really breathe well sometimes. Now my foot started pulsating or twitching (I don’t know what to really call it) and I don’t know what to do.. I googled my symptoms and I found ALS and now I’m so scared.. I’m only 20 years old and to get an appointment with an neurologist is gonna take like 2 months..
I forgot to mention I also have trouble sleeping now sometimes.. like I wake up a few times a night now and I don’t know why
@@sarahx5067 how you doing?
@@sarahx5067 how you doing now sarah??
Anyone here have an initial diagnosis of MMN?
I m just 24....and my both legs becomes little weak and little pain in muscle while walking or something without pain, mostly without pain, which affects coordination of my walking from last 2 months...All the time I worry that it's a ALS
:/ damn man I have something similar
i suggest you to see a neurologist as soon as possible.
@@thewatchcollector007 already showed....done emg..... every thing fine
And I m started getting better
@@RezaulKarim-bn5vx best news ever. My father passed away with als a few mths ago.
@@FEXAZb I suggest you not to go doctor if it's not going worse.....
Don't believe in these things..........this disease is like finding a very small coin in big football field stadium......
❤️HEALTH UPDATE: My Jan 12th 2022 Iowa City Neurology visit has had both amazing results and yet mind boggling disappointments!
Only recently did I read all the results, on the papers given to me from Iowa City ( after looking for the date / time for the next appointment and realizing that I had not been given new appointment date ) and this, even after expressing my concerns about my recent near death experience on Jan 2nd, ( ? )
* On 1-2-2022 - I went from feeling fine to all the bulbar onset symptoms attacking at once, as well as my central nervous system short circuiting, to where my body temperature, heart beat, blood pressure, breathing, inability to talk, drooling, w/ extreme nausea, cardiovascular, etc, all were greatly effected at once, which overwhelmed me, and to where I needed E.M.T.’s, an Ambulance ride and spent a few hours in the local hospital E.R.
1.) I have steadily reversed the symptoms of A.L.S. to the point that, now, they are officially stating that I don’t have A.L.S.!!
WOOHOO, RIGHT? ( No, not exactly. )
2.) I’ve proven that it’s my Central Nervous System that’s short circuiting, and that most of my additional symptoms are not from ALS, that this latest near death experience, and most of the others, as most of these bodily malfunctions come from the neck, of which after my major neck surgery on August 7th, 2018, I never regained my strength.
3.) Dr Nance ( Iowa City Neurology ) He expressed his thoughts with me, as being: It’s not that they screwed up my neck surgery but that the neck surgery stopped further damage” ( in his mind, that my having an extremely high tolerance to pain had allowed my nerves to be damaged as I waited for years after discovering I had 5 swollen discs and 3 pinched nerves in my neck, ( approximately 20011 / 2012 ) and because I didn’t have the neck surgery until Aug 2018.
4.) According to him my neck surgery is why I’m healing but if this is his analogy/ his theory, then …Q: Why have I recently had the worst near death experience ever?
5.) And another …Q: Why has he made my next appointment over 6 months away?
( And he did so, after I openly expressed my concerns, that my life is in more danger now, than ever before? )
6.) I let my thoughts be known, to the woman I spoke with on the phone in Iowa City - that I won’t live 6 months, if steps aren’t taken ASAP to find out what’s causing my central nervous system to go haywire!!
7.) So, When I called Iowa City Neurology, I gave my concerns, my complaints, requested another Lyme disease test, and I asked for them to give me a referral to see a different neurologist, as I view mine as incompetent and uncaring, so Iowa City is sending me papers to sign, which will give my new Neurologist permission to view my medical records from Iowa City, Neurology, speech therapy, physical therapy, etc, etc
8.) An up-to-date on my recent / current / ongoing symptoms, which are off / on, are:
9.) Breathing issues - different body positions effect lung capacity, lungs range from barely opening to opening more than usual, fully or nearly full capacity.
10.) Cardiovascular- Was previously, steadily improving and doing great, blood vessels were clearly visible & bulging, reminded me of how they use to look when I worked out. ( In feet & hands only )
- Now, however, cardiovascular is suffering, it varies a lot, mostly with blood vessels either barely seen or not visible at all, which gets worse, occurs when I have breathing issues, which is common, now it’s an every day occurrence again, …
- so I’ve laid off most of the supplements and started consuming more nutrients from natural sources, started consuming more foods, and fasting less.
11.) Mild Heart Palpitations / Skips A Beat / Or Beats Fast Momentarily - Even when at rest. ( Breathing is effected simultaneously when this occurs. )
- I’ve had these problems before, now they’re back and they’re worse.
12.) Speech - On September 24th, I regained my normal voice back, again, for the first time in a long time, although it still comes & goes, I have it less & less now, and it varies greatly, my voice is still not as bad as it used to be. I remember well what it was like to not be able to talk at all so I’m very grateful that I’m still able to talk. 👍
13.) Walking - I’m still walking, w/ out assistance but only short distances. Legs are still stable, at times shaky, like before but now I’m stronger than all previous tests. 👍
14.) Body Is No Longer Rigid - I Can Touch My Toes/ Trim My Own Nails -
15.) Ankles & Hands No Longer Ache When I Bend Them -
16.) I Recently discovered that I can once again lay flat on my back without discomfort, and without it causing breathing difficulties!! ( This is the first time in many years that I’ve been able to lay / sleep flat on my back ) 👍
16.) Body Temp Issues - Hot / Cold - As before, these symptoms have returned, daily.
17.) Hand Strength Has Returned ( can pick up a chair again with left hand ) - Although Hand strength varies, I can tell that most of the time it’s stronger than it’s been since my 10-7-2018 neck surgery-
18.) Started recently ( mainly ) having discomfort / aches & pains at the base of my skull, from backside of one ear clear across to the other side as well as in my neck, head, shoulders, and shoulder blade areas although they’re brief, they’re becoming more often.
- Going to make a chiropractor appointment just to make sure my body is in correct alignment.
19.) Started recently having more fasciculations ( involuntary muscle twitches ) again, in both left & right legs, as well as mainly right hand but also the left.
20.) Muscle wasting continues - I used to have muscular 16” arms, now I’m guessing they’re about 10”.
( * but some muscles have gained strength over the past 3 years, for example: 3+ years ago my left hand could barely lift a pillow, whereas most days now, my left hand can lift a chair )
21.) I’ve spent most of the past 2+ years finding out which foods heal / strengthen and detox the body, as well as how to read labels, learn which foods to avoid, as well as studying biochemistry and more recently, added neuroscience, in order to do what Dr.’s said is impossible: my staying alive!!
22.) There are many MND’s ( Motor Neuron Diseases ) and many illnesses which effect the Central Nervous System. If you’re aware of what I could do or take which would help me, please, I need all the help I can get, as so far, my neurologists haven’t helped one iota!!
- So far, it’s been my desire to live, and my own extensive non-stop searching ( on UA-cam ) to which I’ve gained enough knowledge to carry myself this far, ( nutrition ) which has enabled me not only to stay alive but also to walk and talk, again!! ( TY, GOD!! ) but the battle is not over.
I could use a few more prayers.
Prayers Matter!! 🙏⚡️
So have you been diagnosed with ALS ?
Sending healing prayer. God bless you.
Praying for you 🙏🙏🙏🙂
Get well soon bro
Insanely anxious. I have had some muscle twitches, first in my left shoulder the alternating between both legs, sometimes at the same time. And over the last 36 hours, my left leg has felt weak and sore. Almost like a growing pain or I had exercised hard the day before (I didn’t). What are the chances this is ALS?
Charles, Thank you for reaching out. Keep in mind that just because you are experiencing some symptoms does not mean you have ALS! Dr. Bedlack cannot answer your question directly, but we recommend making an appointment to see a neurologist. You will likely need to make an appointment with your primary care physician and explain your symptoms first. They may run their own tests, or you can ask to be referred to a neurologist, who will run tests to rule things out and these will help them tell you what may be going on with the twitching and pain. If there are still concerns, you can search for a neurologist who specializes in ALS on our ALS Clinics Directory at www.youralsguide.com/als-clinics. It might also be helpful to learn more about ALS symptoms, diagnosis, and more at www.youralsguide.com/about-als. We hope this helps, Your ALS Guide
@@YourALSGuide I been having ALS symptoms for a long time now a year this month I had three EMG last came back with carpal tunnel mild I been to the doctor every month twice month the muscle twitching is worst has moved to my face, hands feel light, sometimes tremors or jerks happen and I’m always in a lot of pain. I see different in my muscles but my weight not moving
@Ansh Bawa still have symptoms and still going to to doctors I have an appointment aug 11 this is the worst experience in my life I’m 34 years old I’m very depressed and miserable
@@ticklemebitch1 I’m sorry to hear that. I’ve been having the muscle twitching for about six months and my fingers, legs, arms will jerk sometimes as I’m falling asleep. It comes and goes. Sometimes I don’t have it for days and then it’s nonstop for a week. Im pretty freaked out to be honest. I really hope things get better for you. Really makes you think about your mortality. I just turned 33
@@mclovinlife4018 yes I just had my first kid I’m so scared I been going to the doctors for a year and half now two to three appointments a month they say no to Als but I’m scared they wrong
Hello everyone. We filmed Dr. Bedlack on a variety of topics for Your ALS Guide. Unfortunately, he does not have time to answer individual questions outside of his clinic. You can learn more about ALS symptoms at www.youralsguide.com/early-als-symptoms.
If you are concerned you might have ALS, or need support after your diagnosis, you can search for ALS clinics at www.youralsguide.com/als-clinics and support service organizations at www.youralsguide.com/support-services to connect with ALS neurologists and professionals near you. We also have a comprehensive Newly Diagnosed Guide at www.youralsguide.com/newly-diagnosed. Hope that helps!
Please note that this video is for educational purposes only. Medical advice can only come from your treating physician.
can't get an appointment for 6 months.
Same here. The wait is effing brutal
Hello! Is there something particular about muscle twitching in ALS compared to benigne muscle twitching? Like duration/ frequence/ localisation? Thank you!
I Believe muscles twitch constantly in ALS.
Intermittent twitching is most likely BFS or a Fatigue issue. Are you experiencing symptoms?
@@gtgt3928 thank you for reply! I cannot really objectify my simptoms, it feels like a weakness in calves, but each day is localised in the other one. And fasciculations happen maybe 20-30 times/day in different parts of the body but they do not last more that 2-3 seconds... i hope that being only 29 years old the chances are extremly small...
@@Cangurul0921 I wouldnt worry too much.
I have had twitching daily for the last 14 months. Could be in my thumb one day, legs the next, Shoulders the next. They will twitch for 20 seconds at a time also. I've had 3x Emgs and nothing found. How long have u had the twitching?
@@gtgt3928 did u have an full EMG ( 4 different body regions)? Did your neurologist said u should repeat it? I took my fist EMG and was normal but unfortunately I had to found out that it was incomplete because it had tested only the calves...
@@gtgt3928 how oft do you twitch anyway? In my case not more that 20 times/day but it drives me crazy each time!
Is this inherited? 7 years ago my oldest brother died from ALS, he had he had it 2 years😊
Only about 10% of cases are genetic
Is there a timeframe after twitcing starts when you can say its bfs, i got twitches for allmost 4 years now, and at the moment since 2 weeks i have micro cramping all over my body, could this still be a form of als?
You don’t have als, you would be completely immobile and on a breathing machine after 4 years.
how is it now?? tell me bro, you can be honest.
There’s many different diseases that can cause spasm, twitches, or tremors. Not just ALS .
@hubertk.1662 tell me how you are going today?
Hi sir I diagnose recently als with sod1 gean I have strong fammly history all my family members died 1 year I am woorid about is new gean tharpy available in Australia plase any where help me
My cousin felt like something crawling under his skin on his arms at first.
I’ve been having trouble breathing since the beginning of last year, just recently my legs started cramping and twitching. I hope I don’t have this 😭
I too have trouble breathing sometimes. It is a horrible feeling. I also have muscle twitches and dull, short lasting pains all over my body, mainly in the joints. Diagnosed with general anxiety and moderate depression. Anxiety can also cause breathing problems. Also, when im anxious about these symptoms, I tend to focus on them more, and they get amplified. Not a good coctail to have. Hope you'll feel better soon.
@@shanbazall I also have ben diagnosed with bipolar and anxiety. I take medicine for it but it doesn’t help.
What makes you anxious? For me it is primarily health anxiety. If i read about diseases or disorders, I'm almost 100% certain I have those disorders. Also the thought of being anxious or having a panic attack makes me anxious. At worst I couldn't leave the house without a panic attack because I was so afraid of having one. The trick that did it for me is to take control of the situation as best as I can and force myself to go towards these fears. Getting some exposure at my own pace. At times I needed the help of my friends with this. Just watching over me as I did it so I wouldnt die. Its a bit embarassing since im 33 but it had a positive effect. In time the brain will realize that having a panic attack wont kill me, and it simply stopped producing them... When new, scary things arise, I have to do that battle all over again. it could last for weeks or months.... My latest Demon is my bed. I'm super scared of not getting any sleep. That fear is often preventing me from sleeping. So now I'm getting used to not sleeping, so that the fear of not sleeping will slowly disappear. The progress is slow and there are bad days and good days.
So painful arms and leg twitching pretty much rule it out
For anyone on here having weird stuff like muscle twitching and pain in joints and muscles.. Check yourself for lyme disease.
I was diagnosed with ALS a month ago but I know I had it for 6 months My mother died from it
Damn man I hope you find peace Man .sorry about your mom .
Hi is twitching the first Symptome of Als
@@emmalazarus1282 is this really true i have twitching it begin in November 2017 24/7 i am worried about als is twitching the first Symptome
@@sabrinam.3576 Did you get twitches after any vaccine ir infection ?
No, it is not…twitching is a result of neurons dying, you would likely have significant symptoms of clinical weakness and wasting.
Clinical weakness is not a feeling, it’s complete failure to perform a task with a particular appendage or muscle group.
Feeling weak is much different then being weak.
Hey sabri how you doing? Most probably you have already looked this up but twitching is rarely a first symptom, if it was it should also be running pararel with lack of strength and loss of function
@@ramiromen6595 my twitching begin in November 2017
Thanks
Thank you for your straight forward response 👍
He looks like an older Austin Powers.🤓
Sooooo truueeeeee 😂😂🤣
If i get this. Im going in the chamber
I’m convinced I have als I’m fucking doomed.
Same :(
@@corinnastark713 what are your symptoms
@@jocelynmejia3110 twitching and atrophy in my arms and shoulders
@@corinnastark713 Weakness is the crucial thing to look for.. If you dont have progressive weakness it can be many other things.. even anxiety
@@corinnastark713 Functional impairment is typically distal in ALS (it starts with the hands/feet). It can be proximal (shoulders/hips) in rare cases, but other diagnoses should be considered first. Talk to your doctor.
Maybe its caused by the football field u played on in College. I wissen u all the best . Greez from Germany
dude looks like he's wearing a disguise