This is something that you have for the rest of our lives here on earth ! Be strong and courageous, do your physical therapy, and remember not to ignore the symptoms and rest relax and keep the faith and by all means necessary stay away from the pain meds
Are you seriously saying that there is no cure? No means of physical activity, surgery, or medication can fix this? I don’t believe it. I have this too and I can’t flex or control or stimulate certain muscles in my left arm and shoulder. I also have scapular winging as well. Im going to change my diet and exercise less and only work on stability and stimulate my left arm through exercising and stretching as much as possible, and I truly believe that eventually my damaged side will be healed. I hope that other people that are suffering with this will healed too.
Good God, I had the EXACT SAME SYMPTOMS. Worst pain of my life lasted about 36hrs, after which, I was partially paralyzed on my left side. I'm left handed, and could not lift my toothbrush up to brush my teeth. This was back in 1996. I decided to use a "new" search engine called Google. I typed in "unrelenting agonizing shoulder pain. It came up with acute brachial neuritis, aka Parsonage Turner Syndrome. It took until 2005 to get an actual confirming diagnosis. It turns out I have the recurring form of this illness. it absolutely is an illness, NOT an injury. The Parsonage Turner Syndrome sufferer has an immune response (likely from a reaction to the herpes zoster or epstein barr virus or both). Your immune cells literally destroy nerves in your brachial plexus.
Just thought I'd add a bit. Parsonage-Turner need not be associated with an injury to the brachial plexus. Anything that profoundly activates the immune system can trigger it. It can also be bilateral, and may occasionally involve nerves not associated with the plexus at all. The general term Neuralgic Amyotrophy, had also been applied to similar symptoms in the nerves associated with the lumbosacral plexus.
Great info! You should create a video explaining the difference between the "ailments" and site the sources. I'd be more than happy to reference in the video description.
Suffering with this... Don't know since when but my right tricep , pec muscles and scapular muscles seems to be atrophied and they are very weak ... Like I can lift a lot with my left and with my right , everything just collapses .. been trying the gym but nothing is improving strength wise ... Hence I'm going to a neurologist on Friday ... Don't know whether he will even make a proper diagnosis... Just wish me luck ... Hoping to make a recovery like you
Thanks for sharing, I still have no concrete evidence of what happened, 4 months ago I had what I thought was a pinch nerve in my neck, within a week after that , I had level 10 pain at night when I would lay down to sleep, thought I was going to call an ambulance every night, I would stand up and walk around to try and get it to calm down,...went to a chiropractor, nothing good came out of it,..took 4 weeks for level 10 pain to subside, over the next month I kept my arm and shoulder protected, they were very weak,...later in that month I noticed part of my pec and tricep were damm near missing,.. i originally thought herniated disc, ...the inside of my index finger and inside thumb have a strange sensation I cant call numbness but something similar,. .anyway since then I've started PT got myself up to 10 pushups which I could not do even one in the beginning.... Right now dealing with health anxiety and trying to be strong,...but the pain was so indescribable seems impossible to not have a little PTSD... This familiar to anyone else?,..I mean My primary care dr was unaware this syndrome existed til I brought it up🤦♂️
Yes, sounds very familiar. Just now that I dealt with this almost three and a half years ago and still get some balling and pain. But, full strength and full functioning. It will likely get better.
In my case, it's back , 4 years 4 months after now is 5% loss on left, which was not an issue at all in the past oh boy here we go again but i know the spots to push and give pressure piont to relieve the symptoms best i can to physical therapy . I use alot of Arnicare gel and its as good as pain patches and COLD WEATHER kills me
I suffered the same injury you did mine was due to being in traction too long from shoulder surgery. The pain is off the charts it’s like a sunburn on steroids it’s horrible
I actually am experiencing the same exact symptoms as you but I don't recall being injured. Did you also experience a reduce in arm swing while walking. I go see my neurologist in April so it's just a waiting game. I have been a living wreck since the new year came because I feared this may be ALS. I'm only 27 so I'm really hoping this is a brachial plexus injury.
myesha31s, things like stress, flu shots, and over exertion can cause symptoms. I don’t know why you would hope you have a brachial plexus injury because they’re terrible. As far as reduction in arm swing, that is not relative, in fact it sounds like you are overly aware of sensations and standard movements. Get off the ALS train, you’re 27. I’m sure the neurologist will dismiss your concerns quickly. Life is too short to worry. Enjoy everyday to the fullest and live one day at a time. And stop swinging your arms!
myesha31s, get off the ALS train. You’re probably fixated on the idea that you “might” have ALS and “might” be in the beginning stages, because of the scary shit you have researched on Google. Be advised, the credibility of most of that “information” you have consumed is piss-poor. People with ALS do not feel pain, their muscles just stop working.
Hey man first off thanks for sharing this. My name is Anthony I'm brown belt in Jiu-Jitsu I got diagnosed with parsonage and Turner syndrome on May20 2020. Same deal as you it woke me up from a sleep I woke up my wife same deal. It is now Aug 5 2020 I'm still training jiu jitsu but I have muscle deprivation mainly on my tricep and chest but the worst thing is my hand it's on my right side and both my pinky figure and ring finger can't fully open only about half way and half my hand is completely numb. I used to lift weights regularly and now I can barely get a set of 10 LBS on my bunch on my right side. I cant really do any push ups and when I do they have really uneven. I just trying to do the best I can. I feel like I have a million questions I'd like to ask you but mainly how long did it take for you to start to see any turn around. I'd be really greatful if you would answer a few questions thanks
Jacoby Loycano, first I’d like to say I know exactly what you’re going through, it sucks. You probably have atrophy on your back and a winged scapula. I’d be happy to answer some questions for you. Type them out and I will post a video response tonight.
@@christophercarroll589 yeah my atroph is mainly in my tricep and chest my back and shoulder hasn't really seen any. But the weakness in my hand and not being able to Evan open it all the way and complete lack of strength in my arm is really discouraging. My orthopedic identified it almost immediately but he basically just told me the only thing that can be done is time basically saying I just need to wait it out. Lucky for my I haven't delt with any pain after the first 3 weeks but I just refuse to believe there's nothing I can do to regain motion in my hand or regain muscle. I tried the chiropractor that didn't do anything. I was wondering if you have tried acupuncture or found anything that helped you with your muscle recovery
Jacoby Loycano, time and physical therapy... That is it. I know this isn’t the answer you want to hear, but there is nothing YOU can do to regain strength, you need to let your body heal. I would stay away from the Chiropractor, this is a nerve injury.
I'm still training 3 to 4 times a week and that's basically my PT the doctors basically told me they think my jiu jitsu would be better then what they can do I'm planning on starting to lift again starting this weekend I stopped because I was just so discouraged and I thought a break would help
I have exactly this. I am a boxer and I developed a brachial plexus injury my shoulder blade wings now. I had a long thoracic nerve decompression and brachial plexus decompression. My left arm was impacted too. Are your rhomboids impacted? How is the medical side of your shoulder blade? I have a million questions... do you intend on pursuing martial arts? I am sorry there are a million questions. They thought I had bone cancer at first because my shoulder blade was so swollen. Then, they took a piece of my bone. I had surgery December 6th...is the winging gone for you
Brittany, thank you for reaching out! Everything on my left side was compromised: Rhomboid, trap, bicep, tricep, forearm, hand, lat, serratus anterior. My winging has receded, I’m at about 95% recovery. It’s a slow process I still get some balling with movements in the lat but it’s almost gone completely. Patience is key. I am getting back on the mats.
Christopher Carroll I am so happy and thrilled to hear that you for. I hope that you continue to recover. I am afraid to pick up a q tip at this point. Did you ever get blood work done for auto immune genes. Mine did not start off as a whole arm disorder or dysfunction. I wish you a full recovery. It does provide faith for me that I can get better.
@@brittany1991 - I have had full blood panel(s) done for my annual(s). This experience was the a result of an injury during training, not an autoimmune response, not a neurological disease, an injury (similar to a whiplash injury). If you're a boxer it's possible you "just" injured yourself. I have been told when you have damaged nerves (Long Thoracic, Brachial Plexus, or other) those nerves will regenerate at about 1mm/day, so it takes a very long time to heal (1-3 years depending on severity). I know it's easy to overthink and worry about what has happened to your body and "if" it will ever get better, but I found the constantly obsessing over the injury and "checking" didn't make things better, but made them worse. I have watched your video(s), I know that there is severe anxiety over the winging and weakness (not dissimilar to what I have experienced), but that anxiety usually doesn't help people heal quicker, sometimes it has the reverse effect. One thing I would ask your therapist, as I am not sure why you are having your shoulder taped. It is my understanding that the rhomboid and serratus-anterior should be the focal point when using tape therapy when dealing with the Long Thoracic Nerve, because those muscles are the ones that are directly effected. I hope this helps.
@@christophercarroll589 Thank you for the willingness to help and provide insight into this. I know that sounds extremely generic, but it is tough to find people with a similar experience to mine. I do not intend and creating something that does not exist within me, but things still do not make sense in terms of how this happened to me. I do suspect that I injured my long thoracic nerve, and my upper truck over-compensated immensely for so long that it too became compromised. I just do not have the answer. The pain was in the shoulder blade and persisted for so long, then boom.. the started to droop in April of last year, and the rest was history. The cause of it does not much matter now, the treatment for me is the same regardless of the outcome. The fear of where it progressed from is the unsettling part of all of this, and you are correct...the worrying will not help. I just am curious if the injury could have triggered a response in my body, I am twitching a ton on my right now too, but it could be from the muscles getting to relax I have no clue...that is Dr. question.
@Brittany - It's not generic, I appreciate it. I know the feeling of thinking it won't get better and there is limited information online. I'm here to help, by sharing my experiences and letting people know what I have done that helped me in recovery. My guess, you have a ton of "health anxiety" because it is hard to accept that there is an injury, I can tell you're very active and workout and having that ripped away is hard, it was hard for me. The health anxiety leads you to search the inter webs for an answer, because not many people have experience with this injury, and that leads you down a path of self diagnosis (I can tell you neurologists are more familiar with brachial plexus injuries because primary cares think they mimic Neurological issues). I have a great D.O. as my primary care physician who has personal experiences within his family as it pertains to neurological issues (he had a family member die from ALS) and he was quick to dismiss my concerns and diagnose my injury as brachial plexus (stinger) with long thoracic involvement. My winging was worse than yours. This injury is hard it's as hard mentally as it is physically, don't let this pull you into depression. Embrace what has happened with your left side, and adjust, go do what you can at the gym, like legs. Take a look at Todd Duffee's story, I think you will find some comfort in it. www.mmafighting.com/2014/10/7/6928645/todd-duffee
Oh also, have you had a flu shot in the last 6 weeks. There’s a direct link to this condition and the flu vaccine. If so you have a big payday coming from the government. Call me when you have time.
This is something that you have for the rest of our lives here on earth ! Be strong and courageous, do your physical therapy, and remember not to ignore the symptoms and rest relax and keep the faith and by all means necessary stay away from the pain meds
Are you seriously saying that there is no cure? No means of physical activity, surgery, or medication can fix this? I don’t believe it. I have this too and I can’t flex or control or stimulate certain muscles in my left arm and shoulder. I also have scapular winging as well.
Im going to change my diet and exercise less and only work on stability and stimulate my left arm through exercising and stretching as much as possible, and I truly believe that eventually my damaged side will be healed. I hope that other people that are suffering with this will healed too.
Good God, I had the EXACT SAME SYMPTOMS. Worst pain of my life lasted about 36hrs, after which, I was partially paralyzed on my left side. I'm left handed, and could not lift my toothbrush up to brush my teeth. This was back in 1996. I decided to use a "new" search engine called Google. I typed in "unrelenting agonizing shoulder pain. It came up with acute brachial neuritis, aka Parsonage Turner Syndrome. It took until 2005 to get an actual confirming diagnosis. It turns out I have the recurring form of this illness. it absolutely is an illness, NOT an injury. The Parsonage Turner Syndrome sufferer has an immune response (likely from a reaction to the herpes zoster or epstein barr virus or both). Your immune cells literally destroy nerves in your brachial plexus.
My work ethic was the cause of my PTS but was turned away by work comp and my employer 64 now its a journey not many travel !!!
Just thought I'd add a bit. Parsonage-Turner need not be associated with an injury to the brachial plexus. Anything that profoundly activates the immune system can trigger it. It can also be bilateral, and may occasionally involve nerves not associated with the plexus at all. The general term Neuralgic Amyotrophy, had also been applied to similar symptoms in the nerves associated with the lumbosacral plexus.
Great info! You should create a video explaining the difference between the "ailments" and site the sources. I'd be more than happy to reference in the video description.
Suffering with this... Don't know since when but my right tricep , pec muscles and scapular muscles seems to be atrophied and they are very weak ... Like I can lift a lot with my left and with my right , everything just collapses .. been trying the gym but nothing is improving strength wise ... Hence I'm going to a neurologist on Friday ... Don't know whether he will even make a proper diagnosis... Just wish me luck ... Hoping to make a recovery like you
If it is an injury to the brachial plexus the only thing that will help is time… Good luck, don’t get demotivated.
Thanks for sharing, I still have no concrete evidence of what happened,
4 months ago I had what I thought was a pinch nerve in my neck, within a week after that , I had level 10 pain at night when I would lay down to sleep, thought I was going to call an ambulance every night, I would stand up and walk around to try and get it to calm down,...went to a chiropractor, nothing good came out of it,..took 4 weeks for level 10 pain to subside, over the next month I kept my arm and shoulder protected, they were very weak,...later in that month I noticed part of my pec and tricep were damm near missing,.. i originally thought herniated disc, ...the inside of my index finger and inside thumb have a strange sensation I cant call numbness but something similar,. .anyway since then I've started PT got myself up to 10 pushups which I could not do even one in the beginning....
Right now dealing with health anxiety and trying to be strong,...but the pain was so indescribable seems impossible to not have a little PTSD...
This familiar to anyone else?,..I mean
My primary care dr was unaware this syndrome existed til I brought it up🤦♂️
Yes, sounds very familiar. Just now that I dealt with this almost three and a half years ago and still get some balling and pain. But, full strength and full functioning. It will likely get better.
Oh awesome ok. Glad you’re doing better
Any news today hows your recovery can you more tips please
GREAT ADVICE.GO EASY ALSO.
In my case, it's back , 4 years 4 months after now is 5% loss on left, which was not an issue at all in the past oh boy here we go again but i know the spots to push and give pressure piont to relieve the symptoms best i can to physical therapy . I use alot of Arnicare gel and its as good as pain patches and COLD WEATHER kills me
I suffered the same injury you did mine was due to being in traction too long from shoulder surgery. The pain is off the charts it’s like a sunburn on steroids it’s horrible
Thanks for the comment! My pain was severe, I wish it would have felt like a sunburn... Keep healing!
6 weeks of SEVERE pain july 2019 changed my life😮😂😂😂😂
I actually am experiencing the same exact symptoms as you but I don't recall being injured. Did you also experience a reduce in arm swing while walking. I go see my neurologist in April so it's just a waiting game. I have been a living wreck since the new year came because I feared this may be ALS. I'm only 27 so I'm really hoping this is a brachial plexus injury.
myesha31s, things like stress, flu shots, and over exertion can cause symptoms. I don’t know why you would hope you have a brachial plexus injury because they’re terrible. As far as reduction in arm swing, that is not relative, in fact it sounds like you are overly aware of sensations and standard movements. Get off the ALS train, you’re 27. I’m sure the neurologist will dismiss your concerns quickly.
Life is too short to worry. Enjoy everyday to the fullest and live one day at a time. And stop swinging your arms!
I would hope it's nothing but if I had to choose it would be a brachial plexus injury rather then ALS.
myesha31s, get off the ALS train. You’re probably fixated on the idea that you “might” have ALS and “might” be in the beginning stages, because of the scary shit you have researched on Google. Be advised, the credibility of most of that “information” you have consumed is piss-poor. People with ALS do not feel pain, their muscles just stop working.
Hey man first off thanks for sharing this. My name is Anthony I'm brown belt in Jiu-Jitsu I got diagnosed with parsonage and Turner syndrome on May20 2020. Same deal as you it woke me up from a sleep I woke up my wife same deal. It is now Aug 5 2020 I'm still training jiu jitsu but I have muscle deprivation mainly on my tricep and chest but the worst thing is my hand it's on my right side and both my pinky figure and ring finger can't fully open only about half way and half my hand is completely numb. I used to lift weights regularly and now I can barely get a set of 10 LBS on my bunch on my right side. I cant really do any push ups and when I do they have really uneven. I just trying to do the best I can. I feel like I have a million questions I'd like to ask you but mainly how long did it take for you to start to see any turn around. I'd be really greatful if you would answer a few questions thanks
Jacoby Loycano, first I’d like to say I know exactly what you’re going through, it sucks. You probably have atrophy on your back and a winged scapula. I’d be happy to answer some questions for you. Type them out and I will post a video response tonight.
@@christophercarroll589 yeah my atroph is mainly in my tricep and chest my back and shoulder hasn't really seen any. But the weakness in my hand and not being able to Evan open it all the way and complete lack of strength in my arm is really discouraging. My orthopedic identified it almost immediately but he basically just told me the only thing that can be done is time basically saying I just need to wait it out. Lucky for my I haven't delt with any pain after the first 3 weeks but I just refuse to believe there's nothing I can do to regain motion in my hand or regain muscle. I tried the chiropractor that didn't do anything. I was wondering if you have tried acupuncture or found anything that helped you with your muscle recovery
Jacoby Loycano, time and physical therapy... That is it. I know this isn’t the answer you want to hear, but there is nothing YOU can do to regain strength, you need to let your body heal. I would stay away from the Chiropractor, this is a nerve injury.
I'm still training 3 to 4 times a week and that's basically my PT the doctors basically told me they think my jiu jitsu would be better then what they can do I'm planning on starting to lift again starting this weekend I stopped because I was just so discouraged and I thought a break would help
Honestly I was even considering trying to take steroids to see if that works help the muscle growth im so discouraged
I have exactly this. I am a boxer and I developed a brachial plexus injury my shoulder blade wings now. I had a long thoracic nerve decompression and brachial plexus decompression. My left arm was impacted too. Are your rhomboids impacted? How is the medical side of your shoulder blade? I have a million questions... do you intend on pursuing martial arts? I am sorry there are a million questions. They thought I had bone cancer at first because my shoulder blade was so swollen. Then, they took a piece of my bone. I had surgery December 6th...is the winging gone for you
Brittany, thank you for reaching out! Everything on my left side was compromised: Rhomboid, trap, bicep, tricep, forearm, hand, lat, serratus anterior. My winging has receded, I’m at about 95% recovery. It’s a slow process I still get some balling with movements in the lat but it’s almost gone completely. Patience is key. I am getting back on the mats.
Christopher Carroll I am so happy and thrilled to hear that you for. I hope that you continue to recover. I am afraid to pick up a q tip at this point. Did you ever get blood work done for auto immune genes. Mine did not start off as a whole arm disorder or dysfunction. I wish you a full recovery. It does provide faith for me that I can get better.
@@brittany1991 - I have had full blood panel(s) done for my annual(s). This experience was the a result of an injury during training, not an autoimmune response, not a neurological disease, an injury (similar to a whiplash injury). If you're a boxer it's possible you "just" injured yourself. I have been told when you have damaged nerves (Long Thoracic, Brachial Plexus, or other) those nerves will regenerate at about 1mm/day, so it takes a very long time to heal (1-3 years depending on severity). I know it's easy to overthink and worry about what has happened to your body and "if" it will ever get better, but I found the constantly obsessing over the injury and "checking" didn't make things better, but made them worse. I have watched your video(s), I know that there is severe anxiety over the winging and weakness (not dissimilar to what I have experienced), but that anxiety usually doesn't help people heal quicker, sometimes it has the reverse effect.
One thing I would ask your therapist, as I am not sure why you are having your shoulder taped. It is my understanding that the rhomboid and serratus-anterior should be the focal point when using tape therapy when dealing with the Long Thoracic Nerve, because those muscles are the ones that are directly effected.
I hope this helps.
@@christophercarroll589 Thank you for the willingness to help and provide insight into this. I know that sounds extremely generic, but it is tough to find people with a similar experience to mine.
I do not intend and creating something that does not exist within me, but things still do not make sense in terms of how this happened to me. I do suspect that I injured my long thoracic nerve, and my upper truck over-compensated immensely for so long that it too became compromised. I just do not have the answer.
The pain was in the shoulder blade and persisted for so long, then boom.. the started to droop in April of last year, and the rest was history.
The cause of it does not much matter now, the treatment for me is the same regardless of the outcome. The fear of where it progressed from is the unsettling part of all of this, and you are correct...the worrying will not help. I just am curious if the injury could have triggered a response in my body, I am twitching a ton on my right now too, but it could be from the muscles getting to relax I have no clue...that is Dr. question.
@Brittany - It's not generic, I appreciate it. I know the feeling of thinking it won't get better and there is limited information online. I'm here to help, by sharing my experiences and letting people know what I have done that helped me in recovery.
My guess, you have a ton of "health anxiety" because it is hard to accept that there is an injury, I can tell you're very active and workout and having that ripped away is hard, it was hard for me. The health anxiety leads you to search the inter webs for an answer, because not many people have experience with this injury, and that leads you down a path of self diagnosis (I can tell you neurologists are more familiar with brachial plexus injuries because primary cares think they mimic Neurological issues). I have a great D.O. as my primary care physician who has personal experiences within his family as it pertains to neurological issues (he had a family member die from ALS) and he was quick to dismiss my concerns and diagnose my injury as brachial plexus (stinger) with long thoracic involvement. My winging was worse than yours.
This injury is hard it's as hard mentally as it is physically, don't let this pull you into depression. Embrace what has happened with your left side, and adjust, go do what you can at the gym, like legs. Take a look at Todd Duffee's story, I think you will find some comfort in it.
www.mmafighting.com/2014/10/7/6928645/todd-duffee
Ropes pulleys elastic bans and the wall oh yea
Did you have wrist pain
Rick F pain all down that left side, and atrophy, and the inability to flex.
Oh also, have you had a flu shot in the last 6 weeks. There’s a direct link to this condition and the flu vaccine. If so you have a big payday coming from the government. Call me when you have time.