My ALS symptoms and how I got diagnosed
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- เผยแพร่เมื่อ 14 ส.ค. 2019
- My ALS Journey Russell Cowger video 2
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What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. "A" means no. "Myo" refers to muscle, and "Trophic" means nourishment - "No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region.
My Symtoms:
Cramping
Stiffness
Fasciculations
Weakness
Balance is bad
Socks are harder to put on.
Lids / bottle tops feel tighter and I sometimes need help
Drop foot right leg
Right arm fatigue faster than left
Cramping everywhere
Legs, arms, while shaving, scratching back, sleeping , washing neck, have had cramp under chin, hands, arms,
Walking up/down stairs is hard
Definitely cannot run up or down stairs anymore.
Stumble a lot
Putting backpack on makes me loose balance
Trip a lot
When I get stressed, I get so tired it feels like I'm dreaming while awake
Go Fund Me:
www.gofundme.com/russcowger
A very good friend had ALS. I was blessed to walk with him much of that time. An amazing guy.
I'm posting this here for all the scared people who are having muscle twitches and cramps and are worried it might be ALS. I went through 18 months of insomnia, intense fear, panic attacks and muscle twitching & cramping which brought me to two different neurologists, multiple EMGs, nerve conduction studies and muscle tests, and several MRIs. Ultimately ALS/MS/motor neuron/ neurodegenrative disease were ruled out, and I was diagnosed with benign fasciculation syndrome. This means I tend to twitch, and it gets a lot worse when fatigued, stressed, or sleep deprived. It is not related to ALS and can't become ALS. It was all brought on by health anxiety.
You see, in my extended family (mom's side), three people have died of ALS. Most recently, my aunt passed away in 2021. While I was visiting her to say goodbye, her husband was very tired and enraged about the situation, and he directed it at me (I think bc he never liked me). He screamed at me that I might be next, and that I might pass it down to my children, and that he couldn't believe I hadn't done the genetic tests. That triggered a ton of fear in me, leading to chronic health anxiety and the symptoms I was experiencing.
If I could do it all over again I would have gone to the doctor sooner, and I would have gotten genetic testing sooner. I really thought I was having weakness but the muscle tests did not show any.
Please don't let health anxiety ruin your life. It is better to know what is going on than to worry or wonder. My neurologists told me that muscle twitching and fear of ALS is the number one reason that people seek consultation.
It took me a long time to seek diagnosis because of fear, but I realized that either way, it would be better to know, because diagnosis and genetic testing can give you access to medications and drug trials. I pray for the eradication of this disease and I believe it is coming within the next 5-10 years. I pray that everyone reading this will be well.
P.S. PTSD can also lead to these kinds of symptoms, so if you have PTSD or suspect you might, you will want to seek the help of a psychiatrist as well. All of these things can be related.
P.P.S. Menopause can cause insomnia, muscle twitching, and cramps as well, which is not a very well-known fact. The point is that there can be many reasons for these kinds of symptoms, and all the more reason to seek expert opinions.
P.P.P.S. Genetic counselors are the best resource if you want to get testing related to ALS. If there is any family history, the test is free right now through Prevention Genetics, and Genome Medical was my resource for counseling.
I started gym in January, worked out intensively and in April muscle twitches started all over my body.
Panic has taken its toll and my anxiety skyrocketed.
Hearing neurologist gave a clean EMG with that symptom means I am gonna stay stressed for quite some more time.
But thanks for sharing!
Hi! I wonder when exercising you sweated a lot, your electrolytes went down and the twitching started. My electrolytes went down as I get that twitching after a lot of exercise but my electrolytes were okay yet my MD said it was because of my electrolytes and dehydration. Four medical professionals brushed it off over 2 years as I wondered because my electrolytes were fine. I was just diagnosed Benign Fasciculation Syndrome but will get EMG's (elecric shock responses) to my legs to help determine why the twitching. My twitches showed up on a monitor screen at Mayo Clinic and that MD brushed it off too, strange. I'd not worry too much and just hang in there and ask to get checked by a neurologist. I hope you are better now. @@AntonioEating
Hi, how are your symptoms now? Did you experience muscke weakness and twitching all over your body?
I've had fasciculations for years, but they're benign, thank goodness.
Great job Russ. What a great way to share and help others. Much love as always♡
Great to see you taking what life has given you and using it to help others. I love you brother
I love that yall bought a camper. I think it's wonderful that your wife is so supportive. Ya have a great one there. Good catch! I pray that you get into your trial and have some success. Keep on keeping on. Love from PA.
Russ, thank you for sharing your story and you deal with this just like a champ. Prayers to you and your family. 🙏🏻
You are very brave and so well-spoken. What a tribute your are to your family and ancestors.
Thank you for sharing your story, Russell. You have helped me and I'm sure others by doing so. I wish you the best.
I'm in this situation now. Thanks for sharing this for us other ALS people.
Thank you for sharing your journey Russ. My prayers to you and your family 🙏
My heart goes out to these men brave enough to EDUCATE us while they’re suffering. You’re a God given gift! Thank you! ❤❤
All I want to say is God Bless You and you are very strong, am scared to death to year from this syndrome and I hope you keep on doing what your are doing, I feel for you and you are just a strong human being I hope you the best and God Bless you all
One more thing you think twitches from time to time not more than 3 seconds are ALS, no muscle weakness or anything else it’s not even always it’s probably 4 times a day and not in the same spot
Russ I wish u all the best, still u smile thats amazing. 👌☺️
Sir, thank you for sharing your journey with this horrible disease. I completely understand your cramps, fasciculations and stiffness. Six years ago I had the exact same symptoms as you described. I got very fortunate to find a highly respected neuromuscular neurologist. When I first went to clinic I was sure I had ALS but after 8 months of testing all the tests were pointing to a myopathy. For me it turned out to be a very rare late onset Muscular Dystrophy. My neurologist says I also have a nerve disease in addition to MD. He said my nerve fibers were dying under the protective coating of the nerves. He has not given this an official diagnosis yet. From my reading I believe he will say I have PLS. Usually takes five years for that diagnosis.
Thank you so much for sharing. Enjoy yourself while you can and don’t worry about money, enjoy your life and that RV rig.
My neurologist told me to treat the next 4 or 5 years as my retirement time, I was 52. The wife and I traveled all over Europe for three summers. You are not alone. Peace
Hi Jeff! How are you doing after 2 years? I've experienced fewer cramps since my Levothyroxine dosage was increased for hypothyroidism. However, I still get cramps, primarily in my toes and calves. Sometimes, I even get left bicep cramps when playing guitar, forcing me to stop and stretch the affected area. I was diagnosed Benign Fasciculation Syndrome two days ago so reading and looking at what videos I can. I've had continuous twitches in my calves for the past two years. Despite my regular MD attributing them to electrolyte imbalance and dehydration, my blood tests showed normal electrolyte levels.
At my request, I consulted a kidney specialist for another reason and mentioned the twitches, but he dismissed them as normal. I also mentioned it to a Physicians Assistant at an Orthopedic clinic, who had the same response. I was getting an EMG of my legs in 2021 at Mayo Clinic and asked the MD giving the test about the fasciculations I could see and hear with the monitor and he just dismissed it too. All four medical professionals brushed off my concerns, even though the twitching has persisted 24/7 for two years and recently extended above my knees and possibly to my left hand. So finally the MD 2 days ago took me seriously and diagnosed me so I am grateful to him. A person really must be their own best advocate when it comes to their health care as I believe the whole system is in decline, Mayo included.
Prayers to you Russ!
Thank u so much for answering me back. U are truly a hero and I admire your strength. I been freaking out because I have had alot of numbness and tingling and like a twitching that is not persisting but I suffer from anxiety and depression. I just got put on lexapro to help with my condition. I also felt my toes like a cold sensation.
I say if you have a concerns go see a neurologist they're the only ones that can really diagnose ALS. I appreciate you saying I'm a hero. I just want to document this stuff to maybe help someone and also give my family a way to remember me.
Many prayers for you.🙏
Bro i really wish you all the best
Thanks for your story bro
Thank you for your update and wish you all the time you need, it's been 5years since my diagnosis and still walking ok have not lost much speach skills,I hope I get 5 more years is all I really want.
That is great to hear. I'm grateful I've lasted as long as I have. I see people that were diagnosed after me already passed away.
Thanks for sharing of yourself
Thank you for sharing your story, I don’t have ALS I have Schizophrenia but was curious to know what ALS is all about.
Praying for you
My heart goes out to you Russ. I had a step mother get ALS so I've seen it first hand. I play tennis and I started experiencing pain in my arm a few months ago. It improved with strength training exercises. Currently it's fine but will hurt if I play. I have full strength. Now for the last few weeks I have had pretty constant muscle twitching in that side in my calf muscle. I have had a limp on that side for a few weeks as well but I don’t think it’s any weaker than the other side. Sometimes there is slight pain going up the stairs. I’m hoping I hyperextended it or hurt it without my knowing. My foot (same side) also feels like it cramps up time to time. My calves also cramp up with exercise easily. I’m hopeful it’s just my mind producing all these symptoms. I worry an awful lot about it.
How does it feel now?
Fuckin hypochondriac
are you okey?
God Bless you man
Thanks fpr doing this video
God Bless You!
It's amazing how many people have twitching as the first sign of ALS, but people on ALS forums say that is never the first symptom.
It’s not the usual presentation
@@michaelclark1811 But it definitely is sometimes. Read up on Aaron Lazar. He had just fasciculations for 6 months, went to three neurologists during that time who told him NOT ALS, and then finally new symptoms that got him diagnosed ALS.
I miss his videos he was a great guy ☹️
Same :(
@@wombat5252 He passed ?
Thank you for posting this. I began with left drop foot. 3 months later weak leg. 12 months paralyzed leg. 7 MRI’ brain, spine, hip. Every month MRI’s of same areas. Nothing showed up. EMG did show nerve damage. After 3 neurologist I was just told ALS. More blood work ordered and brain MRI. This last doctor tried to do EMG and I screamed so loud shaking for 3 minutes for pain whole body trembling. June 9th I will get to find out definitely if it’s ALS. I also get twitch in both legs.
I am wishing the best for you.
Thank you Russ so much for sharing your incredible journey. Painful as it must be. I won't try to pepper you with questions in an attempt to diagnose me or ease my ALS health anxiety. I am working closely with a neurologist for that. And with every test we are moving closer to an answer. However, in your symptom description you did mention something I don't often hear elaborated. How stress can greatly impacts your day. The weakness/faciculations/cramps are physically tolerable for me at this point, but the fatigue is like nothing I have experienced before. Things that didn't use to feel overwhelming like my young three children arguing or multi-tasking at work are very difficult to handle. Like there is a fatigue set-point and once I cross that, it makes the rest of the day very difficult. I become physically slower, speech volume goes down, becomes more hoarse, more difficult stringing together thoughts. Rest appears to be the only thing that helps. Does/did fatigue both physical and mental greatly affect your day? Again, thank you for sharing your story.
You should get checked for lyme disease. I worried I had MS/ALS for years and was finally diagnosed with lyme bartonella and babesia
@@GTschumacher what were your symptoms?
@@cbo9090 electrical sensation all over randomly, burning.muscle and joint pain. The thing that scared me was I'd feel slightly faint head pressure then I'd find it hard to walk feeling a bit dazed and confused.legs would feel like jelly. Now I get muscle spasms very similar to when someone gets hypothermia.
@@GTschumacher I found out I had Lyme after I went to the hospital with a rash and fever a few months back. I mean I didn’t find out for about a month but they gave me 10 days worth of Doxycycline at the hospital just in case. That’s the bare minimum of any Lyme treatment I’ve ever seen and I wonder if I still have it.
@@cbo9090 you got it early mate , I'm sure you will be fine.. mine was undiagnosed 10 years so have some permanent damage.
It's calle atypical ALS presentation which accounts for less than 5% of the cases. fasciculations and muscle cramping will present once muscle weakness has begun in 95% of the cases. fasciculations alone are not a typical ALS presentation , especially if they affect more than one place at the same time oppon onset...
Thank you for this.
I would agree but I don’t even think this is atypical ALS. He stated that his twitching started after he lifted weights in the same muscle group he was using. That was his actual first weakness and not his leg. The neurons controlling his shoulder muscles were dying causing weakness and his shoulders twitched.
I don't think it was atypical presentation at all. Stiffnes, muscle cramps and fasciculations, motor deficit...and of course, the progression...all of these symptoms are always present in ALS.
Twitching needs to be looked at Everytime. It isn't always serious. But it's serious enough to see what's going on.
U are a hero and probably one of the strongest people I know. I appreciate u taking time to answer me back. I just have one last question did ur toes or fingers get really cold or hot?
At this point my feet and hands get very cold because I don't have the circulation in them anymore.
Thanks for being so informative. Top line results for the NurOwn's trial will be out in December. Hopefully the treatment will be FDA approved and you will be able to live a long and happy life. I have a friend who was in the trial and he got NurOwn, not the placebo, and he's convinced it could prolong his life indefinitely. He said it was "dialysis for ALS". His name is Trevor Stoffer and he and his friend Eric Weinbrenner both run a charity called Paint For A Cure. Best of luck to you, sir. Hopefully you and other PALS will have access to NurOwn soon.
I was in the trial also and hoping if I did get the placebo. That they might give everyone in the placebo group the medicine. Fingers crossed that we get something soon
@@TheDanguruss I hope the best for you all. It's not an incurable disease, there just needs to be more of an effort made, especially with the technology now at our disposal. I think great strides in ALS treatment will be made soon thanks to people like you who are spreading awareness and sharing your experiences. Have fun out there on the open road. I'm pushing for you. All the best!
🙏🏾
The reason it's incurable is because it's a degenerative disease. We have zero idea the mechanics of it. We understand bacteria, cancer, physiological problems. But neurology is a department where most patients don't get better.
Hi so sorry to hear of your diagnosis..
Can I ask 1 quick question when the twitching started in your shoulders dis they start at same time? Did they happen overnight or did they come on slowly?
Hello Russ. I know your first symptom was muscle twitching. But i would like to know if it was present all the time even if you were active, using your arms or just when your muscles were resting. Thank you
God bless you 🙏. I am going through some things now that has been going on for a while. I was diagnosed with neurosarcoidosis and it is progressive. I have about every symptom a neuro patient can have. I'm worried I was missed diagnosed and have something more insidious
U are gonna beat this u give me hope u are so strong! Yea I just find it weird because I have more muscle pain then anything everywhere. But seems like u and others didn't have that.
I started with muscle pain and electrical sensations years ago. Now muscle twitching and problems walking for the last 15 months
Muscle pain isn't a symptom of als
Not im the beginning or never ?@@ChristinaDay-vi1yb
Hello Russel. Thank you for sharing. This information is very helpful for early diagnosis. Can you please explain one thing, you told that it's been a few month after you felt your fasciculations and only in summer you felt weakness in your leg? I mean before that you had only twitching and nothing else?
Yes when I first started having fasiculations I was still lifting. I was having cramping but I thought it was just because I was working out so hard. I was squatting 300 lb deadlifting about 225. Bench press I was doing about 250. It was about 6 months later that I noticed that I had weakness in my leg. My foot was clicking every time I was taking a step. Also my right flip flop kept coming off.
@@TheDanguruss by clicking you mean clicking sound in your foot? If it is the sound do you have the same clicking sounds in other joints due to muscle weakness (shoulder joint for example). Sorry for so many answers and I wish you all the best!
From my foot smacking the ground. Because my ankle didn't have the strength to hold my toes up. They call it drop foot
@@user-py6cj4ot2m His foot flopping on the ground.
Hello warrior , one question ,from the fasciculations to the first emg, how long did it take?
Hello were the muscle cramps associated with contractions like the muscle flexing involuntarily? Or were the just a sharp pain.
GOD BLESS YOU .....I MYSELF AM HAVING PROBLEMS
You had an electromyogram at the beginning, and a clinical examination by a neurologist, what result did you obtain in both tests?
Brother i hope you could still fight with such situation bravely....
If possible can you please tell me that the twitching start at only at shoulders or you were experiencing to others parts of the body also?
My right foot was dropping when i would walk up steps. Or from street to a curb . I would step up on to the sidewalk an my right toes would drop an trip me. This started back in the mid 1980's. No othe symptoms that i can recall untill about 6 months ago. My speech got slurred an i had trouble swallowing food. An liquid. Now my right arm is weak an my muscles twitch. My knees are stiff . An my neck is in pain. I was just diagnosed with progressive ALS.
I'm not having a good time at dealing with ALS.
I'm worried I have it but I can't see a neuro until January so I don't know what to do. Prayers for you
Have you looked at the Deanna Protocol? It could be very helpful!
Hope you are well.
Hello bro one question about butt kicks you couldn't lift your leg or you lifted it half?
Thank u so much honestly u are amazing . I appreciate u not be annoyed with my answers. I feel like I'm going crazy being paranoid. Also when this started did u just loose your balance or did u first have muscle pain then started losing your balance when triping?
The first muscle weakness was on my right leg. I had dropped foot on my right foot and kept catching the carpet. My balance didn't start getting affected for probably six more months after that . Now though my balance is really bad I have to use a walker everywhere I go. Starting to implement electric wheelchair now
@@TheDanguruss hii russell your first right leg symptom was foot drop?
@@superv-man8424 the first thing I noticed was I could not kick my butt when trying to do butt kicks. The next thing was the drop foot
@@TheDanguruss thankss for the answer you are a warrior 💪🏻and from the kick butt to the fallen foot how long did it take?
Hey, ive read that EMG usually knows when something bad is happening before the symptoms start. Do you know why your first EMG did not pick up any bad signs? Also, did your twitch start on your right side or your left side? Also, were you able to feel your twitches or was it just something you saw when looking at it? Also does your twitch ever stop or is it literally 24/7 even while you're moving? also did your cramp start with your twitching? sorry for all the questions really curious
I believe that the first EMG that they had done was on my left side when my right side was the side that was first having issues. I believe if they would have done the mg on my right side they probably would have seen some muscle deterioration. My twitching never stops it is 24/7. Yes I can feel the twitching. The twitching fasciculations started in both shoulders at the same time.
@@TheDanguruss was the twitching sporadic at first or constant?
@@iLLmaticTrojan He passed away last August.
I have twitching in my hands and feet and face. My legs often feel “heavy” I don’t know how to describe it and nerve damage in my feet.. did or do you have any of these
@@lisaspringer5394hey you have instagram to talk? I have some questions
Wow I had almost the same as you. Diagnosed June 2020 but began 2 yrs prior. 2 years going to every study and doctor , found nothing. Until ALS neurologist to say ALS. I would like to see another video of you now. I posted mine ALS Diagnosed 2020.
Sorry for the late response but how do I see your video
@@TheDanguruss ALS Diagnosis 2020
Love you man
Do you get constant twitches that never stop in one area or do you get them in your whole body?
This all sounds so much like what I'm dealing with. Thank you for sharing. Do you have internal tremors as well?
I do shake from the inside when things get pretty intense.
Me too
Puck Island whats your diognos
Life Is Beautiful whats your diognos?
@UCHyzdCzx5HfHmtPvYbQgWng ALS
Your strong man, God has your back. But i have to ask, obviously i had fears what if i get ALS but my doctor told me i don't have the symptoms. Do you know the difference between normal twitching and ALS twitching? I have normal twitches but its due to me lifting heavy weights.
I was first diagnosed with cramping fasciculation syndrome. The only difference is With ALS There is definite weakness.
My Cousin Frances just passed away this week 9-20-2022 RIP ♥ She was diagnosed July of 2022 ,and just had a rapid decent in health. She only had a feeding tube inserted into her abdominal a week before she passed. We all thought she would hang in there, and live longer, but thats not what God had in store for her :( WE know the FDA was to release a new medicine Albrioza ( that has been delayed in the US) on 9-29-2022, but she was not fortunate to get the treatment she needed medicinally. Prayers for all of those who are suffering from this disease. God Bless them all
Lost my cousin two weeks ago tomorrow.
Russ. My heart goes out to you. You'll definitely be in my thoughts and prayers but I got a question for you and I'd likr your advice and your opinion
thank you. Ask away
Russell cowger Russell cowger I know you've been getting a lot of questions throughout your videos. I'm sure answering the questions help keep the mind from wondering. But the past 3-4 weeks I've been experiencing some muscle fasciulations in my legs. Pretty much my whole body, my neck, my arms, thumbs, lip, my glutes my back pretty much everywhere. It all started one day in my calves and the next day I woke up extremely fatigued in my legs and tight in my calves. I'm also experiencing pain in my hamstrings and butt and calves sometimes. Like a sharp stabbing pain sometimes. Especially in my butt when I sit a certain way for too long. Which made me extremely paranoid I saw on Google that muscle twitching and als and all that crap. So I went to my PCP and we did bloodwork and everything was good we did a neurological exam and he assured me I didn't have als or a MND but I went to a neurologist anyway and we did another thorough exam and he said the same thing. I had some briske reflexes in my knees, which he said was not alarming because I'm young and in good shape, and it was the same on both legs so probably nothing to worry about. So I sought a third opinion and we did an EMG which came back 100 percent clean. They assured me no way I had als or a MND but the twitching is there in the back of your mind. Only abnormality I had was slightly prolonged f wave latencies in my lower extremities which he said was because I'm tall (I'm over 6'2). And they assured me they didn't miss anything and that the EMG can never be done too early and I'd be the first case they've seen in 35 years that started with twitching. But your case I don't quite understand how you had a normal EMG? And why they only did one side? That makes me feel like they missed something or the error was on there part because twitching is a sign the muscle is atrophing away and would definitely show up on an EMG anyway I can walk on my toes and heels and had a good physical exam all around. Which in your case I'm guessing they found something on your physicial exam that alarmed the physician and that's why they did the EMG?
They said I had some pretty bad health anxiety and prescribed some medication for me and they think it's from BFS and over use and anxiety related.
@@johnrobbins7669 The first thing that I did was stop all coffee, which didn't help me. Twitching called fasciculations are often Benign. But if there's constant cramps and weakness involved than there's a need to be concerned. Drink a lot of water, take potassium and Magnesium for a week or two and see if that helps out. As for the EMG test, I think we all that end up having it test normal at first and are told absolutely No ALS. And a year or two later are diagnosed with it. Also, all other tests usually come back normal. EMG test can confirm ALS but cannot rule it out. So if a doctor tells you that due to the EMG that you don't have it, it only means that his EMG didn't pick up any signs of ALS. They should tell you that your muscles are in good shape and not to worry. But to keep a close eye on it and keep coming back for future appointment every 3 to 4 months, which they usually do. But to say that you don't have it due to the EMG is really not accurate.
WADE I don’t have any cramping or weakness or atrophy. Just fasciculations. My neurologist said If I were having symptoms of lower motor neuron disease which twitching is then my EMG would have been abnormal and I would have other things. Not saying you’re wrong. But my neurologist and the clinic they work at are very good and they said they’d never seen or heard of anyone in 35 years of practice beginning MND the way I described my symptoms
The symptoms I have are similar but I keep thinking it was something in the environment that poisoned me. I was an athlete also. When I was working out one or both calf's would cramps super bad. Morning stretch would also lock up but only my back. My bicep aches all the time. I wish I could help you out. Your story has helped me out and I'll definitely tell friends about this video.
how are you now?
Hello sorry about your diagnosis, I’ve been experiencing twitches widespread for about 1.5 years now as of last week I started to notice my left thigh feel funny I can’t even describe the feeling I want to say tingling/ticklish or just feels different can’t really explain it. I’ve started to notice that walking has been a little weird on my left leg now I feel as though as I have the same strength however but am still fearful of ALS. I’ve been to a nerurologist who had diagnosed me with bfs but now with this new symptom I’m afraid maybe it’s something more. I am only 22 and was wondering if you had a similar experience anywhere where you felt like the muscle felt different as I have described.
My muscles never felt any different. I would just notice that I couldn't do something that I previously could do. And if I would flex real hard I would shake real bad
That makes sense did cold happen after your toes got stiff and stopped moving? Sorry im so scared for my systoms. I'm sorry for asking so many questions.
My toes have a mind of their own and move whatever way they want. I don't really have that control to move them also because I walk less. Don't worry about the questions they're all right,
I was diagnosed in November of 2018 my arms are too weak to do anything and my legs are having issues now but still walking
Hi Russell, how are things going for you now? Some comments ive read on the web seem to suggest that many tests - nerve conduction, MRI etc come back negative. I guess that's because to diagnose als other things have to be excluded. Highly stressful process, isn't it? I fear the same for me. Anyway, all the best. God bless. Mark
thank you for asking. Things are starting to get tough for me. We are about to make some big changes. The RV is getting difficult to walk around now. Yes it is a process of elimination to get the ALS diagnosis. An EMG or muscle biopsy will show nerve deterioration. This whole process is extremely stressful. Then when you know that you have ALS and you're in my boat there is no money for naturopath doctors or alternative medicine to try and heal. I will be getting in a second trial and I'll update all of this in my next video. Thank you for watching my stories
@@TheDanguruss you have to take treatment with health max india they have specific kind of machine which will bring control to your symptoms 🙏
Great share Russ. I’m here from Hong Kong. My legs , my arms and my throat have been twitching for one month. Also I can feel my muscles are shaking. But I don’t hv any muscle weakness right now. My doctor said I need to wait for about 6 months to see whether there is any muscle weakness. At this time, I’m so scared. I’m 25 year old and I think this happens so quick. Did you feel any muscle shaking at the early stage?
I'm not 100% sure what you mean by muscle shaking. I just had the fasciculations consistently and then would have some deep jerks in my muscles from time to time. It sucks that you should even I think you would have something like this. At 25 years old you should be out partying. :)
Thank you for the reply Russ. When I flex my muscles(including triceps, abdominal muscle, my face, my legs ) , I can feel my muscles are shaking obviously . My muscles didn’t shake before. I don’t know whether it is the beginning of muscle weakness or not.
in the early stages I was still lifting weights. I did not have any muscle shaking at that time. Now that I am weak if I try to do something that is hard or heavy my muscles will shake. I also have clonus that I did notice in the early stages. This was last year when I was much weaker.
th-cam.com/video/Gw4C5I_8LXw/w-d-xo.html
Thank you Russ. I’m wishing the best for you
@@manchunfung9974 Health anxiety
Thank you for sharing.
Did you or do you have feelings like pins and needles in your legs, feet, hands, fingers? Hope everything goes very slowly. God bless you.
I have never had pins and needles feelings. Thank you. I'm hoping I find the magic recipe or they come out with a cure soon.
@@TheDanguruss Yeah I hope they find the cure for this soon.
I'm watching this video in May of 2021. Just wondering how he's doing now.
How are you doing now- have not seen any recent videos...only from 2 years ago. That is concerning.
Hi Russel I hope you are going well.
I truly believe there will be a treatment for Als soon mate. Hang in there, your videos are inspiring you are very courageous.
I have had fasiculations for 8 months especially in my hand between my index and thumb DAILY and all over body I've had 2x EMGs 5 months apart the neuros cannot give me any answers. I am quiet surprised that they didnt find any findings on your first EMG even though you had fasics? I am so anxious I feel as if I have Als even after 2x clean emgs I feel all your symptoms minus the weakness. Can you shed any light on the fasics and were they random? All over? Hot spots etc? Thank you Russ. P.s Please try Cryotherapy and Follistatin peptide I have heard great results with this combination.
The fasiculations have always been mostly in my upper body. I used to love cryotherapy and also doing cold dips in rivers and legs. I always felt so much better after them. I have progressed so far now though that I can no longer do it safely.
@@TheDanguruss God bless you mate.
A true warrior. Look into follistatin.
@@gtgt3928 Hi how are you my index finger twitching. Since 1 month.i am so scared 😭😭😭
Was your twitching in your shoulders when it started did it go and come. Or once its started it never stop?
Once it started it has never stopped. This is why in all my videos after this I wear tank tops so that you can see the fasiculations on my shoulders and arms,
When you say you cannot run upstairs anymore, do you mean it is because of muscular problem or because you get out of breath easily? I also wanted to know if your cramps are related to bad movement, or it happrns out of the blue. Exemple: you talked about under the chin cramp. Is it only when you are yawning or anytime? Sorry I have so much question since I am afraid I have this, even if I am 28 y/o
At this point I have a hard time walking upstairs I try to avoid them all together. I do not get out of breath it's just that my muscles get zapped from energy so quick. all the strength that I had in my legs is pretty much gone at this point and I'm barely walking. The cramps can happen at any point. the one that I get under my chin from time to time is usually like if I'm trying to turn my head up to the right or left can cause the cramp in my chin. The cramps that I get in my legs and feet just happen out of the blue.
Russal cowrag you are A brave man ..
I have some questions i feel muscals pain first and then start pain in tham and a few days pain in scond tham ..
My docter test NCS and he said nothing but aftar 2 month twitching in my arms sholdaer and wole body and also hm pink fingr plase telll bro...
How much gap between weakness and fasiculations sir?
When fasics started u used to get in one area or is it widespread at onset?are they constant or in between there are fasiculation free periods?
Which part u used to get more and which part u had weakness 1st
Kindly reply sir thanku
It was great job...appreciate for ur work
Fasciculations have been in the arms mostly. I do have them from time to time is in my legs. My right leg was the first area to have weakness.
When your twitches first started, were they constant? Or were they like little one-time twitches? It looks like in your video they're constant now, but how often were they at first?
Since they started they have never stopped. Sometimes more intense but they never stop.
@@TheDanguruss They don't even stop for 30 seconds, a minute, a couple of minutes, or 15 minutes at a time? Sorry to be so detailed but just trying to compare your symptoms to the ones I'm experiencing here.
@@mistatwitcha6355 the twitching in my shoulders and biceps never stop not even for a minute. My legs on the other hand twitch sometimes they will stop for all day sometimes.
@@TheDanguruss Thanks for the info. You're a great person for taking the time to help others like you do. I appreciate you!
@@TheDanguruss is twitching the First Symptome of ALS
Hello. My name is Stanley from Australia. I my self BFS but have not been diagnosed with it as I not worried to get it look at as I had twitching for 12 months so far without weakness or muscle wasting. But I learnt about ALS after looking up twitching and I wouldn't wish this horrible Disease on anyone. I was wondering about the cramps you get how easy do they start and with your twitching how dose it feel. Painful or just annoying. My twitches I can see them but hardly feel them I do cramp but mostly in the feet or when I really stretch out my legs. But that could be due to my uncontrolled blood pressure. But yeah I just really want to gather information to it helps people in the future. Thank you for taking the time to read this and I hope the best. Kind regards Stanley W. BRIGHT
The cramps I get can happen anywhere and are very intense. The knot from the cramps can stay up to 3 days. I wish I could be in Australia you guys have two trials for ALS that sound promising.
Russell cowger I heard from many that the cramps are not like your everyday or I would say a normal cramp. Have you considered contacting any Australian MND trails to see if it's even possible to be move to Australia to try it. Also have you looked up PLS it's like the Benign version of ALS. Because I noticed you said your als is slow progressing and PLS is slow progressing. I know a few get diagnosed with ALS in fact it's PLS. Also will be keeping up with your Vlogs :). Stanley.
@@stanleybright2597 I wish it was pls. I would say that I have noticeable change in weakness about every three weeks. Hopefully should have new video by next week.
@@TheDanguruss The cramp is the toxin damaging your nerves.
@@sheli4239 I would like to know which toxin it is I do try many supplements in order to clear things up. My cramping continually gets worse. when I get a cramp it usually gets so tight that it takes days for me to get the knot out.
Did you get pain with the twitching? My muscles just started twitching a week ago everywhere and now getting little pin pricking feels in arms and tight feeling in face. All of this is just off and on not constant. No noticeable signs of muscle weakness. Of course googling systems is an awful idea but it led me to this video. Thank you for sharing your story, you will be in my prayers 🙏🏼
When the twitching started I had no pain with the twitching. when it first started I had it in my face also and it was just super annoying. I have never had any pain with the twitching. I am lucky to only have pain from cramping. However I do see the other people with ALS do have pain.
Russell cowger about how long from the twitching did you notice weakness? sorry for all of the questions!
@@LAUR3NEM It was about 6 months before I started noticing an issue when I was walking.
I love u man
Hey Russ,
I’m having some fasciculation’s and cramps as well. Getting an EMG done next Thursday.
Question is how long do your cramps last? An hour, or days?
My cramps don’t go away.
Do you also get tightness at all?
I have to adjust to make the cramps go away. If I can adjust quickly enough the cramp will put a knot in my muscle for days. Yes I do have tightness in my shoulders and hips. I also have stiffness when I first use my muscles when I get out of bed I will lock up.
How did your results go
Hello sir, really sorry for your diagnosis...
I have been twitching for 4 or 5 years now and what worries me is the fact that I lost muscle between thumb and index finger and also in my right bicep. Also having difficulty consumings liquids and food. Could this be als? I am in my early 20s.
I would recommend you go see a neurologist if you're concerned.
Hope you are doing well
Hope you are fine wherever you are
Before your feel started to get cold did they twitch alot and had drop foot first?
Drop foot was first. I don't really have a lot of twitching in my feet just my toes move from side to side or back and forth. Toes will bend downward also cramp my feet real bad.
Hey Russel do you take b12 supplements ? :)
I was and had for few years. I had to stop for me to qualify for the NurOwn trial. However stoping I have not felt a difference.
@@TheDanguruss okey i understand. sending u a big hug
Sorry about your diagnosis. It seems as though a lot of healthy fit people get this like athletes. I read an article where they conducted a study that showed rigorous exercise could play a factor but of course no solid evidence. The only reason i even know about his disease is because i was having twitching and dr. google introduced me to it. I was sent to a neuro to be checked out and given an emg. It was clear thankfully and was told it was bfs. 4 years and i still twitch. I can never forget about this disease and the people who suffer from it
Besided twitching, did you present any other symptom?
@@richardlionheart9921 yes a lot of symptoms that started after a virus. charlie horses, off balance, extreme fatigue, night sweats and the twitching. they were really bad in the beginning, i would take first break at my job and my legs would be twitching crazy like i had run 2 miles. also i would feel a vibration in my muscles like a buzzing, hard to explain. doctors could find no explanation for what was wrong. i still get off balance but has not gotten worse, the twitches are random and more active when my body is tired
Hello sir, my parents won't allow me to see a neurologist, I'm only 18 and I want to ask about your twitching... Did its spread to every part of your body or only in one place? Have you felt tiredness or exhaustion? Shortness of breath? Or is there any vibrating senstion you felt? Thank you and I hope you're doing fine.
Sorry it took me so long to answer this. I constantly am tired and have exhaustion. With all the twitching that I have going on in my chest and my back it will feel like I'm vibrating. This would be an awful disease to be thinking you might have. If you have concern I would make it a priority this year neurologist
I had severe cramping calf muscles, twitching, leg weakness, limbs would go numb when sleeping, overall weakness, dizziness. I found out it was gluten and gut microbes. Stop gluten and take probiotics, especially those probiotics which kill bad microbes. Lyme microbes are part of this too, start treating for lyme with herbals. I struggled to walk for about 5 weeks. The neurologist said I was exposed to a toxin which damaged my nerves. Well guess what, if I hadn't figured it out and taken probiotics and stopped gluten I would still have weak legs, and possibly nerves completely destroyed by now. I think it is a combo of lyme, gluten, bad gut microbes. Keep in mind EMF also damages your good gut microbes.
What probiotics do you take? What strains?
How did you find out that it was gluten and microbes exactly?
How do you find out it was hut microbes? And what's the treatment you are using?
Had a clean EMG just one month in to twitching so thought I was clear. Now worried. I'm 2.5 months in, twitching getting worse.
How are you now?
Is there a diagnostic test for ALS to rule out other possibilities? BTW, how have you been doing lately? I commend you on how well you seem to be taking this.
Yes testing is basically a process of elimination. An EMG or a muscle biopsy will show that muscle deterioration. It has been so Smoky where I've been at in Colorado for the last week. So I feel like my attitude has been in the gutter. I don't always take it all that well. Thank you though.
@@TheDanguruss There are always ups and downs, and I think venting a little frustration is part of the normal range of emotion in dealing with a difficult situation in a healthy manner. It is completely understandable, but I myself try not to let it absorb me, because then I no longer think it is beneficial. Focusing on the basics, like people, nature, music, spirituality or intellectual curiosity, often serves me well.
@@bgates275 I totally agree
Hi, is the twitching painful at all? I am an anxious person, but I am having fasiculations and they are painless, but noticeable. I also am having pain in my neck and feel kind of weak.
The twitching is not painful at all. It does get super annoying at times. my first noticeable weakness was in my right leg. If you're feeling overall weak hopefully could be fixed with a supplement. I would seek out a neurologist to see if they might be able to find out what is causing it.
What was your first symptom? Was it the stiffness when you woke up in the morning? Or was it the muscle twitching?
The muscle twitching in my shoulders. They call the twitches fasiculations.
@@TheDanguruss Thanks for the response. I have been having muscle twitching all over my body for about 6 weeks now and I am becoming very concerned. They said I was vitamin D deficient and I've been taking the prescribed medication and still no improvement. How quickly did your muscle twitches spread? Does it twitch while you're moving or only while you're still? When did the cramping begin for you? sorry for all the questions. just very concerned
@@ekeneoranu4394 The twitching started in my shoulders and worked its way down into my biceps it's been in my arms since the beginning. I do have twitching other places but it does come and go only in my arms does it stay consistent whether I'm moving or staying still. I want to think the cramping started to get real bad a couple of months after the twitching. That's when I first started taking a bunch of magnesium to try to help but it would n't make any change. At this point if you're only having twitching and cramping I would try not to worry too much about it. They could be benign.
Russell cowger how long did it take to start in your arms that it went to your biceps ?
did you ever get the sensation you were rocking on a boat like internal vertigo?
Just my balance has gotten gradually worse, but I don't get vertigo.
Hi sir good day sorry to bother you again,sir you first notice cramps,it last for a long time?or it gone in a seconds or a minute?it happens everyday?thank you sir
Don't worry about bothering me. This gives me something to do. When I first had cramps they would be in my calves, feet, toes, hamstrings, and quads. I would also get them in my hands. The cramps that I would get in my legs would last until I would get straightened out. Then sometimes I would have a knot in my leg for up to three days. I've had them in my calf so bad they took all of my body weight and my wife's body weight to get my foot to flatten out. Then that knot stayed in my leg for days. I get cramps everyday if it wasn't for the baclofen, quinine, and salt water that I drink my cramps would be horrible. Even though I take all this stuff I still get cramps daily just not as bad. I hope this answers your question.
@@TheDanguruss thank you sir,one last sir,what is the difference in terms of twiching on als and bfs?thank you sir
@@butterheads6985 BFS is benign fasiculation syndrome. This means you would have twitching with no muscle loss. There is also a CFS cramping fasiculation syndrome. This means you would have cramping and twitching but no muscle weakness. The thing is they have no idea why people's muscles twitch.
@@TheDanguruss thank you verymuch sir,godbless us all,sorry for many question sir,does bfs twiching all over the body the same with als?sometimes i twich many times,sometimes very few,but everyday,thank you sir
@@TheDanguruss u must also be having bfs ohk👍
Hi mate. Hope you're doing okay. I had massive muscle twitch in my forearm back at the start of June. Went for about 2 weeks. Has now since gone. But im sort of getting these phantom twitch kind of sensations, again in forearm.
From your experiences and knowledge what do you think??
I would say it would not be a concern until you have some sort of weakness. They can be benign fasciculations. Make sure you talk to a neurologist, if you still have concerns.
Hi sir how are you doing now
Are you replying the comments
What’s your condition now ?
Hello! How oft/day did u have twitching at the beginning? Thank you!
Have you ever try detox protocol. Most als patients from heavy materials. Do you think that what cause it in your experience. Be strong 👍
I have had multiple tests for heavy metals and there is no elevated heavy metals in my system. I have always thought my ALS had to do with microbiome. Even though I have had my stool samples examined and they came back pretty good also.
@@TheDanguruss heavy material can’t show on blood test or urine the stay inside fat tissue or organs look for dr Chris shade I have ms it helps me a lot I’m on the process. Try it man don’t give I prey for you 🌹stay safe
@@otb6666 I'll give it a look
Have been having twitching in both hands/wrists off and ok now for a few months. The twitching seems to start in the inside of my wrist, and spread to my thumb and first two fingers. It lasts anywhere from 30 seconds to 3 minutes.
I'm currently doing physical therapy for frozen shoulder right now, the twitching seems to be worse after I work my shoulder.
I've seen/am seeing a neurologist for this, and am getting a second opinion. I've had two negative EEG'S so far, they are considering an EMG. Also had an MRI of my brain, cervical, thoracic, & lumbar spine w/ contrast.
I do have Chiari Malformation, and a Syrinx near my brain stem. I also had an L4-S1 discectomy in 2017, but it's extremely unlikely any of that would be causing my symptoms according to my current doc.
Wishing you the best.
I lost my husband from ALS 12/16/08 it affected his ability to eat and speak
How old he was when he died
God bless you. Friend, I am 31, and I have had fasciculations for my whole adult life. They were benign and I never worried much although they would be annoying when they came. They never kept me up. However, 6 months or so ago, I started getting a twitch in my elbows for a month , then my leg and they both left. But recently , I’ve been so sore. Like super sore for no reason. My arms and hands are weak, but I have no problems gripping , or anything other than it just feels so painful almost like carpal tunnel only now it’s on my calves and hamstrings. I worry about ALS or MS .... do you think it could be what I fear ? Both my hands are so sore equally
I would suggest that you go see your neurologist. sorry that it took me so long to respond sometimes these sneak in here without me seeing them
Please seek medical care from a doctor of neurology. Spewing your symptoms on someone else is off putting.
Omg I have the same symptoms.!!!!
How much gap between weakness and fasiculations sir?
When fasics started u used to get in one area or is it widespread at onset?
Kindly reply sir thanku
It was great job...appreciate for ur work
They started in both my shoulders and it was about six months before I had weakness in my leg.
@@TheDanguruss
Thank you..were they continous for 6 months or is there free period of fasics in between.?
Any family h/o for you sir?
Thanx for the prompt reply
I wish all the strength 2 you
@@sureshreddy-xx7zz the fasiculation never stopped. They are still going on today. I have no family history. Also only 5% of ALS patients have family history of ALS. Most ALS patients are sporadic.
Thank you
I also started getting twitching all over body since November 2020. Did a neurologist check with emg on my left side where twitching is worse but not my right side. It came back clean. But looking at your example you also got clean result. I will have to wait and see whether i get any weakness later this year. Praying it is just anxiety related but honestly still scared deep within. Cant really figure out why twitching is happening all over without any logical reason.
It really sucks not haveing answers. I'm pray that you do not get weakness. If I was starting this whole thing over again with the knowledge that I have now. these three supplements I would've take at the beginning.NAD+,NAC,NRF2, TURMERIC.. also if you take any BCAAs stop taking them now.
Why stoping taking bcaa can you explain more about this matter please.
@@otb6666 art.torvergata.it/handle/2108/1181?mode=full#record
@@TheDanguruss I don’t know mr.Russell if true well all bodybuilder should have got ALS never heard someone has it. Wish you good health don’t give up man try to find what best for you I have MS and I’m trying to heal myself nutritionally without meds it has been 6 years it work with me
@@otb6666 my father-in-law has MS and has lived with it for 30 years. At the time he got it it was a death sentence. He actually does pretty well on the medication that he takes these days.