Good to hear from you Russ , it’s great to see that you are still fighting to figure out a way to try and heal . I have been diagnosed with a bad case of BFS but I feel like I may be progressing but who knows really, I have my 3rd EMG April 29th. I kept wonderin when youd make a video , you should release more if the time allows it , myself and I think others enjoy hearing from you. I would actually like to hear you talk about supplements and what you have tried and how it did for you, thanks again for your videos we see you bro and keep fighting it is the only way, and its inspirational in my own life thanks.
@@GTschumacher I have never found anything that slows the twitches. Everything that I found saying they had less twitches I have tried. Baclofen is the only thing that at least makes them not so powerful.
@@TheDanguruss I'm not sure if its clonus, been mild tremors mainly in lower and upper back for a long time , yesterday the right glute and leg would really shake leaving the muscle feeling painful and bruised ..most of my movements now never feel smooth everything feels like it's done in a thousand small movements rather than one smooth motion 🤯
I know this is a tough time, I myself am in an ALS scare and I have seen my suppressed weaknesses come to the surface. I see your soul calm and you seem to accept things as they come. I truly admire and respect you. Would love to meet you one day.
Been following your journey m8 from a wet and windy UK.Sorry for your pain and suffering your a good guy. More money and effort should be put into a cure and medicine for this horrible disease.Keep strong god bless you and your mrs,merry Xmas thoughts are with you.
Also about how long after u notice the first systoms did u experience foot drop or stiffing on a certain part of your body? Sorry for my questions and if I'm being annoying.
Antonio... Reading between the lines I'm getting the impression you are worried about something. Respectfully, I think you need to go and seek professional and medical advice regarding your situation.
They have been the same in my shoulders since the beginning . They might be a little less now because I don't have as much muscle to show them as well.
By the way do you hear and have you heard any crackle sounds in your shoulder while moving it? I feel the pain in my right shoulder and crackle sounds when I try to do exercises
So it has only been in the last month that my right shoulder has started to pop a lot. Also if my wife lifts my arm up to put my shirt on I have new pain in my right shoulder also.
Hey Russ, Just so you know I do still like to keep track of ya and where you're at physically/mentally. You look really good and seem optimistic! If you and your wife ever come through Des Moines, Iowa I'd love to buy you both dinner! God Bless, Joe
Hey Russell. I’ve been experiencing spasms all over my body, calf’s, legs, arms, hands, feet etc. lately I’ve been having forearm pain. Almost as if tho when I use it, it becomes very soar, and twitches. Do you ever lay on your arm and it triggers twitches? I’ve also had forearm weakness, when I do anything strenuous with it it feels as if tho it wants to cramp but doesn’t. Did you ever get this? Almost at the end of my bicep where the forearm begins it’s soar as well. Did you get anything like that? I’m 21
I have never been able to trigger twitching. When my arm started twitching they just never stopped. As for the cramping I cramp all the time. My feet toes calves hands arms shoulders in my throat I have had cramping. I would make sure that you're talking to your doctor to figure out what might be happening
@@TheDanguruss are you able to feel like nerve pain? Some days I get pain in my forearm that when I press on it and It hurts lower wrist area down to my fingers. Is the only pain you experience from cramps? Or do you get nerve pain to the touch? And do you feel feel pain in forearms from fingers when you grasp objects?
@@josereyes-fc9kq the majority of my pain is from cramps. My shoulder does hurt now but they say it's because as the muscles wasted away that it's a bone on bone. No my hands never hurt when squeezing things I just start shaking if I try to flex grab or do anything strangerous. No I do not hurt when touched
@@TheDanguruss thank you, I have some pain when I flex my fingers and brings pain down my arm. I was lifting things the other day and later one when I was holding coke cans I was shaking pretty bad. Have you experienced popping in throat when swallowing? I get this often and some tightness, neck spasms? I have those at times . Thanks so much for responding bless you man
Hi Russell, Good to see you again. I hope they find some cure. I heard you say you rolled on underarm deodorant. Not exactly sure what you mean but we gave up doing this decades ago. The problem is that toxins need to exit the body especially under the arms and if we seal it off the toxin load in the body greatly increases. It is believed that breast cancers can be linked to this practice and quite possibly other illnesses. We spray perfume on our cloths instead. I participated in an awareness week about domestic violence and us men had to paint a finger nail with woman's nail varnish for a week. My nail became so irritated as it needs to breath and so I scratched it off after a couple of days. I had no idea that even blocking off a finger nail can have an effect on our well being. Hang in there.
Were u able to feel them? Plus wer3 they all over your body or slowly in different places.. Thanks for always getting back u are honestly such a good soul and I love watching u. U are super strong!
Yes I could definitely fill them. At one point I decided I was going to try keto. I did keto for three months but found they literally felt like they were ripping me apart from the inside. Once I went back to eating carbs their intensity lessened. They started in my shoulders then work their way down to my biceps, forearms, back and chest. They were also in my thighs. Thank you for the compliments.
So the first thing that I noticed was with my foot I could not keep a flip-flop on my right foot. I did not know at this time though that I was getting weaker. In hindsight though my toes not able to grip the flip-flop was a sign. About that same time I noticed that my step was weird. Every time I would put my heel to the floor the front of my foot would just smack the ground. So when I walked with shoes that had a hard soul they would click every time I would walk. At that time I was running and since I ran on the front of my foot I always felt I could run better than I could walk,
don't want to be a bother and i'm noone special but did any of the dr.s do any bloodwork to check vitamin levels like electrolytes,omegas,vit.d,b12,etc.?
Yes , I am worried man I don't know if my anxiety or more like I wanna think its that. I got set up to see a doctor who is first gonna test me for autoimmune disease. Since what I have is alot of muscle pain. However u said u didn't experience that.
Antonio, relax. I went through some serious anxiety about 3 years ago. I was falling over drunk dizzy for 12 months straight immediately after gall bladder surgery. I began to believe I had every illness you could imagine from CJD-MS-Parkinson-ALS-Brain Tumor etc. I seen 20-30 doctors. I had tremors, fasciculations everywhere, tingling everywhere, electrical zaps (felt like mosquito bites), feeling weak, extreme pain when startled, ocular aura, migraines, facial pain, accelerated tooth decay, I lost 40lbs, my vision declined, I needed glasses. What this turned out to be; I met a upper-cervical chiropractor and he gently adjusted my neck. Then after about 2 weeks the dizziness began to go away. As time went on I came to realize I was fine and today I have nothing. I don't even need glasses anymore. I'm convinced they must have twisted my neck or something during surgery causing me to be crazy dizzy. Its perhaps possible that my neck contributed to other symptoms too. But I had worked myself up to have severe anxiety. And believe me, anxiety can cause all kinds of symptoms. I had a neurologist tell me that I had the most severe anxiety he'd ever seen. Anxiety can really mess up your body. What I learned is that ALS is clinical weakness, meaning you won't just feel weak, it is a remarkable weakness somewhere in your body and ALS, for most, starts out with clinical weakness. Stay strong and listen to your doctors.
@@TheDanguruss looks like you getting better sir,thank god,nurown is effective,hope FDA aprove it,and sold cheaper so all that suffering worldwide had hope
L-serine Amino Acid, recovermode from evlnutrition, Q10, L-Arginine might work, hope you get better, also maybe you could send message to neurosense, they currently are working a solution on ALS.
Yes I would like to see multiple people be able to get it to really see how well it does. I wish they would just give it to everyone that was in the trial, even if they don't think that'll work.
Your a good person Russ, that shines through in your videos ... I hope this trial helps you. Keep fighting !👍🏼
Wishing you the best!
Thanks for the update Russ.
Good to hear from you Russ , it’s great to see that you are still fighting to figure out a way to try and heal . I have been diagnosed with a bad case of BFS but I feel like I may be progressing but who knows really, I have my 3rd EMG April 29th. I kept wonderin when youd make a video , you should release more if the time allows it , myself and I think others enjoy hearing from you. I would actually like to hear you talk about supplements and what you have tried and how it did for you, thanks again for your videos we see you bro and keep fighting it is the only way, and its inspirational in my own life thanks.
Thank you! I wish the best for you man.
Great news about NurOwn 🙏 it sounded more pessimistic in the News. Hopefully you get the real deal in the Healy trial.
How are you? Did you find anything to relieve the twitching ?
@@GTschumacher I have never found anything that slows the twitches. Everything that I found saying they had less twitches I have tried. Baclofen is the only thing that at least makes them not so powerful.
@@TheDanguruss hey russ do you get bad tremors? If so did the baclofen reduce these .
When you say tremors could you elaborate on that? I'm curious if you mean clonus?
@@TheDanguruss I'm not sure if its clonus, been mild tremors mainly in lower and upper back for a long time , yesterday the right glute and leg would really shake leaving the muscle feeling painful and bruised ..most of my movements now never feel smooth everything feels like it's done in a thousand small movements rather than one smooth motion 🤯
God bless you Russ. I love you!
Feel like we would’ve been great buds…feel for you Russ. Cheers buddy
Merry Christmas man always thinking and praying for u! Be strong!
Merry Christmas to you too
I know this is a tough time, I myself am in an ALS scare and I have seen my suppressed weaknesses come to the surface. I see your soul calm and you seem to accept things as they come. I truly admire and respect you. Would love to meet you one day.
Hi Russell. I wish you continued strength on your journey.
Hi Russ, have a Happy Xmas with your Family...!!!!
Happy Xmas to you too
Been following your journey m8 from a wet and windy UK.Sorry for your pain and suffering your a good guy. More money and effort should be put into a cure and medicine for this horrible disease.Keep strong god bless you and your mrs,merry Xmas thoughts are with you.
Also about how long after u notice the first systoms did u experience foot drop or stiffing on a certain part of your body? Sorry for my questions and if I'm being annoying.
About 6 months after twitching started I had foot drop
Antonio... Reading between the lines I'm getting the impression you are worried about something. Respectfully, I think you need to go and seek professional and medical advice regarding your situation.
Thanks man I really appreciate u!!
Much love homie... Merry Christmas. God bless you.
From the moment your spams began have they been the same fast rate or did they slowly increase over time on your shoulders?
They have been the same in my shoulders since the beginning . They might be a little less now because I don't have as much muscle to show them as well.
God bless & Merry Christmas to you & yours from the UK 🎄✌
By the way do you hear and have you heard any crackle sounds in your shoulder while moving it? I feel the pain in my right shoulder and crackle sounds when I try to do exercises
So it has only been in the last month that my right shoulder has started to pop a lot. Also if my wife lifts my arm up to put my shirt on I have new pain in my right shoulder also.
Hey Russ,
Just so you know I do still like to keep track of ya and where you're at physically/mentally. You look really good and seem optimistic! If you and your wife ever come through Des Moines, Iowa I'd love to buy you both dinner! God Bless,
Joe
Hey Russell. I’ve been experiencing spasms all over my body, calf’s, legs, arms, hands, feet etc. lately I’ve been having forearm pain. Almost as if tho when I use it, it becomes very soar, and twitches. Do you ever lay on your arm and it triggers twitches? I’ve also had forearm weakness, when I do anything strenuous with it it feels as if tho it wants to cramp but doesn’t. Did you ever get this? Almost at the end of my bicep where the forearm begins it’s soar as well. Did you get anything like that? I’m 21
I have never been able to trigger twitching. When my arm started twitching they just never stopped. As for the cramping I cramp all the time. My feet toes calves hands arms shoulders in my throat I have had cramping. I would make sure that you're talking to your doctor to figure out what might be happening
@@TheDanguruss are you able to feel like nerve pain? Some days I get pain in my forearm that when I press on it and It hurts lower wrist area down to my fingers. Is the only pain you experience from cramps? Or do you get nerve pain to the touch? And do you feel feel pain in forearms from fingers when you grasp objects?
@@josereyes-fc9kq the majority of my pain is from cramps. My shoulder does hurt now but they say it's because as the muscles wasted away that it's a bone on bone. No my hands never hurt when squeezing things I just start shaking if I try to flex grab or do anything strangerous. No I do not hurt when touched
@@TheDanguruss thank you, I have some pain when I flex my fingers and brings pain down my arm. I was lifting things the other day and later one when I was holding coke cans I was shaking pretty bad. Have you experienced popping in throat when swallowing? I get this often and some tightness, neck spasms? I have those at times . Thanks so much for responding bless you man
Did you have any hyper/abnormal reflexes, or other signs before the weakness?
Hi Russell, Good to see you again. I hope they find some cure. I heard you say you rolled on underarm deodorant. Not exactly sure what you mean but we gave up doing this decades ago. The problem is that toxins need to exit the body especially under the arms and if we seal it off the toxin load in the body greatly increases. It is believed that breast cancers can be linked to this practice and quite possibly other illnesses. We spray perfume on our cloths instead. I participated in an awareness week about domestic violence and us men had to paint a finger nail with woman's nail varnish for a week. My nail became so irritated as it needs to breath and so I scratched it off after a couple of days. I had no idea that even blocking off a finger nail can have an effect on our well being. Hang in there.
Damn lazy Susan Christmas Tree? That's epic.
Were u able to feel them? Plus wer3 they all over your body or slowly in different places.. Thanks for always getting back u are honestly such a good soul and I love watching u. U are super strong!
Yes I could definitely fill them. At one point I decided I was going to try keto. I did keto for three months but found they literally felt like they were ripping me apart from the inside. Once I went back to eating carbs their intensity lessened.
They started in my shoulders then work their way down to my biceps, forearms, back and chest. They were also in my thighs.
Thank you for the compliments.
Sending you love. Your videos are so informative but now everyone knows your wife snores. Lol I love you my friend ,inspired ❤️
When u got drop foot was it a build up of things or did it just happen out of no where after the twitching?
So the first thing that I noticed was with my foot I could not keep a flip-flop on my right foot. I did not know at this time though that I was getting weaker. In hindsight though my toes not able to grip the flip-flop was a sign. About that same time I noticed that my step was weird. Every time I would put my heel to the floor the front of my foot would just smack the ground. So when I walked with shoes that had a hard soul they would click every time I would walk. At that time I was running and since I ran on the front of my foot I always felt I could run better than I could walk,
don't want to be a bother and i'm noone special but did any of the dr.s do any bloodwork to check vitamin levels like electrolytes,omegas,vit.d,b12,etc.?
Yes they do check for all of that. Everything was within values with all my blood work
When you have had your first symptoms you mentioned that was twitching. Was coming and going before you had foot drop. I pray for you .
Twitching never stop since it started.
Dis any of that cause pain or was it more like u were just weak?
Yes , I am worried man I don't know if my anxiety or more like I wanna think its that. I got set up to see a doctor who is first gonna test me for autoimmune disease. Since what I have is alot of muscle pain. However u said u didn't experience that.
Just remember that everyone has different symptoms. I'm pray that you have autoimmune and that they can give you something to help your symptoms.
Antonio, relax. I went through some serious anxiety about 3 years ago. I was falling over drunk dizzy for 12 months straight immediately after gall bladder surgery. I began to believe I had every illness you could imagine from CJD-MS-Parkinson-ALS-Brain Tumor etc. I seen 20-30 doctors. I had tremors, fasciculations everywhere, tingling everywhere, electrical zaps (felt like mosquito bites), feeling weak, extreme pain when startled, ocular aura, migraines, facial pain, accelerated tooth decay, I lost 40lbs, my vision declined, I needed glasses. What this turned out to be; I met a upper-cervical chiropractor and he gently adjusted my neck. Then after about 2 weeks the dizziness began to go away. As time went on I came to realize I was fine and today I have nothing. I don't even need glasses anymore. I'm convinced they must have twisted my neck or something during surgery causing me to be crazy dizzy. Its perhaps possible that my neck contributed to other symptoms too. But I had worked myself up to have severe anxiety. And believe me, anxiety can cause all kinds of symptoms. I had a neurologist tell me that I had the most severe anxiety he'd ever seen. Anxiety can really mess up your body. What I learned is that ALS is clinical weakness, meaning you won't just feel weak, it is a remarkable weakness somewhere in your body and ALS, for most, starts out with clinical weakness. Stay strong and listen to your doctors.
stay strong
Long time, since you uploaded a video.... I hope you are doing Ok man....!! 👍
Hi sir russ good day sir,i just wanna ask,sorry for bothering,what part of body never stop twich even a second?thank you sie
don't worry about bothering me. Twitching never stopped even for a second in my Back, chest, shoulders, and, arms,
@@TheDanguruss looks like you getting better sir,thank god,nurown is effective,hope FDA aprove it,and sold cheaper so all that suffering worldwide had hope
@@butterheads6985 I wish I was getting better. I don't even qualify for the EAP of Nurown.
@@TheDanguruss looks like you getting better sir,how is the treatment so far sir?
@@butterheads6985 treatment is not doing anything for me. I am still declining
I can't wait for my appointment. Lol
russ hope i get to see you soon
L-serine Amino Acid, recovermode from evlnutrition, Q10, L-Arginine might work, hope you get better, also maybe you could send message to neurosense, they currently are working a solution on ALS.
😢
200 people and 50% of them on the placebo is not so much so stats may be even better when thousands of people will try it out!
Yes I would like to see multiple people be able to get it to really see how well it does. I wish they would just give it to everyone that was in the trial, even if they don't think that'll work.
Hi how are sir I hope you’re doing well
I am still alive very nice should have a new video in the next few days to give updates
@@TheDanguruss glad you’re okays don’t give up in faith sir waiting for your update I pray for you 🌹
Through out all this u said u had no muscle pain right?? Its crazy because its takes forever to get the right doctors for what u want tests for.
Yes the only pain that I have is from cramps, and the stiffness after I have lost the muscle. Yes it takes forever to find the right people.
JUST TRY YOGA AT ONCE PLEASE .... I THINK IT'LL HELP YOU ..... DO
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