OMG!! I will keep you in my prayers because I know how depressing and what an impact this has on your whole entire body. I have never known pain like this until I got injured on my job as a laundry aide and I have been through everything you have experienced and no one understands that doing simple things is challenging and extremely painful. I have been on pain medication which is a huge trigger for me but nothing has worked and been to countless specialists, physical therapies, and now I need a cast made by my occupational therapists. I have had the emg tests and cat scans and MRI's but nothing is found and the nueroligist says I have parsonage turner syndrome and i'm just stuck with the pain and having to do exercises to help eliviate the symptoms. I hope you will make a full recovery and be able to get back to living your life and using both hands and arms without pain, numbness, or anything else that will re-injur your shoulder again. Take it easy and I hope you heal and stay strong, don't give up, no matter what keep on going forward.
Thank you for sharing your story. This is my fourth year living with brachial neuritis and was only diagnosed last year after a similar situation to yours. Mine affects my right elbow which is constantly numb and tender, the top of my shoulder, base of my neck and rotator cuff. I still have muscle atrophy but I've noticed a slight improvement in the last 4 months on how much I can use my arm. Been told I will probably never have full use again but I remain positive and take small steps which I think is key to recovering from this horrible disease. I really wish you all the best in your recovery and hope it continues to improve.
i read up that if it isnt treated right away, and not being worked on wtithen 4 months it makes it worse.. so maybe these docotors are just waiting for a year before they help you so they can make money off your pain
I lift. Had this 3 years ago. I'm finally back to about 80% on the left side. If anyone is wondering, you can usually get some of your pec back, but the lat and tricep are more stubborn. Keep the weight light or you will make it worse or develop other imbalances because of it! Ditch the barbell, it will only frustrate you. Dumbbells are your friend! If you can, focus on bodyweight stuff, traditional pull-ups and dips are great for rehabbing the affected areas, if you have the strength to do sets of 8-10
I’m about a year into my recovery and still can Barely do a push up, I was a very active 21 year old and did a lot of weights and now can barely push my self up, is there something else I can do to help this progress? Many thanks
how are you doing now? and can u tell me if u had mild pain and nerve sensations after acute phase, cause i got it from intense workout i believe and now im doing reabilitation
No swear Hi, I had very little pain after the acute phase, just severe weakness in my left shoulder and tricep, and weakness in my lat and pec. Sounds like you could possibly have a pinched nerve.. did it happen in the middle of your workout or afterwards?
I've been suffering with this for almost 2 years now. I still get the pain in my scalenes, chest, collarbone, shoulder, triceps, forearm and lat and sometimes the pain is in the hand. When it first happened my arm went completely numb. It goes away and comes back, when I rest it feels a little better after a while but then working or doing exercise sets it right off again. When will this recover fully and what do I need to do???
Thank you for sharing your story. I have had the same experience with the doctors. Since it is a super rare disease doctors most probably have never heard about it. It takes ages to get diagnosed. But I must say among all the comments I have read mine was the worst experience. I spent six months in a hospital and the nerve damage had already been severe by the time I was hospitalised. Luckily the nerves have started reinnervating and I am hoping it would help a little with the pain. The painkillers I take make me forget everything and everything blurry. My mind doesn't work properly or at least I feel that way. I must also say none of you has mentioned the pschological side of this. I have been told that I need theraphy because of the extreme pain I have been suffering from and having no life for the past seven months. I wish you all good luck with your recoveries.
Yes it does and I don't think I have the power to cope any longer. So what did the doctors teall you to do in the end other than waiting? Anything?? Anyone??
Thankyou. By now hope you are improving. I am 76 and am just recovering from the acute phase one. I had a classic presentation, male, right arm, intense pain in right shoulder and arm just as I was waking up in the morning. My right elbow became painful and I lost feeling and function of the two right most fingers of my right hand. Wiping my bum and doing up shoe laces became next to impossible. For me this continuous intense pain phase lasted for four days. The doctors tried various pain medication, the only one that worked somewhat was codiene but it left me very nauseous. In the end I chose the pain. On the fourth day the pain reverted to waves, where for an hour or two I was pain free. I have been using these pain free periods to try and exercise my arm. Given my age I was initially treated for heart attack but it quickly became clear my heart was OK. When my PTS diagnosis was confirmed at day three, my GP gave me a hug. He said that was because it was about the best thing he could do for me, I would just have to ride it out and do what I could to limit long term damage. In terms of limiting the pain, I have found posture helps, flat on back on the floor with hands clasped over my head. Heat therapy using wheat bags has helped a lot especially now the pain is in waves. I found these applied to the painful parts of shoulder and arm help to extend the pain free period. Given my acute phase only lasted four days I am hopeful for a fairly quick recovery. My heart goes out to those suffering this agonising disease, in particular those stuck in-phase one for protracted periods.
My third neurologist finally told me he believed I had brachial plexopathy after the previous two were hung up on a neck MRI showing degenerative disc disease. He didn't say Parsonage Turner but considering there was no traumatic cause and it just appeared randomly in someone who does a lot of desk work I'm pretty certain this is what he meant. I had the beginning of symptoms just like you in the right arm. It slowly crept up from my fingers making everyone think it was carpal tunnel. Then they thought it was radial after it was in my forearm and causing minor wrist drop. After it entered my shoulder they just kept suggesting PT and didn't know what to do when it didn't improve. It's been about 3.5 years since the pain started in my fingers and everywhere it goes seems to take forever to recover. I've been having the shoulder pain since Aug 2017 myself and it may be slowly resolving finally (big maybe, but I'll pray). After a million attempts for ergo devices at work I just wanted to cry. Using a computer mouse for my engineering work is complete hell so that's about 50 hours a week I spend in misery. Maybe there is a light at the end of the tunnel. My back spasms seem controllable by dry needling but residual perceived weakness remains on my shoulder. I'm told my right arm (the affected arm) is stronger than the left by everyone doing a diagnostic now after 3 months of PT but I sure feel weak on it. I'm trying to enjoy the outdoors and start weight lifting but wow the right arm gets tired quick. I get tired of everyone asking why I don't just take advil for it. I think the worst part is except for one parent everyone just says it's my fault for not being athletic enough. Someone has to always be at fault I suppose. Maybe I don't have Parsonage Turner but I sure fit the description and your story to a T. My neck gets stiff sometimes but I can't do any spurling test and cause the symptoms to worsen, really don't think it's cervical. I rambled but I really feel for you and I know exactly what you're going through. This is extremely difficult to bear and I can only pray that is in fact temporary, even if temporary is measured over half a decade.
@@TonyFlorida I'm still working and trying to be active. Need the insurance and money for alimony. Just went to the range this weekend in fact though holding anything in front of me becomes quite uncomfortable. Even a friend showing me his new VR station was painful for hold my hand above my waist. I saw a 4th neuro who focused on old EMGs which would seem to indicate a pinched nerve in the neck, though the exact level seems to switch depending on who I ask. Going for a new MRI shortly. My other neuro confirmed he did mean 'Parsonage Turner' and even with the EMGs he still insisted he believed it was not a pinched neck nerve. I'm stuck between a diagnosis that requires waiting it out or one that requires surgery. Very frustrating. I hope you're continuing to improve, whichever condition I have I empathize with your pain and struggle. I've become one of those problem patients and I can sense the resentment from my doctors. I pray, do my PT, and try to take gabapentin in the hopes that I can have some of my old life back. I think you've had more significant muscle weakness than I have, but you have had pain starting about the same time as me. Mine continues along the bottom of my right arm (triceps) and into the armpit/back. Feels like a nerve is being stretched hard when I raise and bend my arm. My doctor did say that despite what the internet says, brachial plexopathy pain can in fact last much longer than 2 weeks. His disagreement with the other 3 neuros is that 'other doctors usually don't test for it.' I don't know which diagnosis I prefer to be honest. Sorry for the novel, I understand your pain and I sincerely hope you're on the up slope now.
I first listened to your video in the car. I just noticed you rub the same area of pain and weakness that I have in your right arm. Have to admit the FMLA is very tempting sometimes.
Hello. I was diagnosed when I was 9 years old. I have a very rare reoccurring, extremely painful case of HNA (Parsonage Turner Syndrome). I am now 42 and am left with chronic pain and muscle atrophy. I have been through a great amount of different doctors and specialists throughout my life and am now with the University of Miami with a team of doctors. I am currently doing another round of P.T. and O.T. and pain management. I refuse now to take opiates and narcotic drugs as they do not touch the pain. I have had several rounds of various injections and found some relief as my "good" muscles are now painful and my back is suffering due to overcompensation. I also have winging of both my scapula. EMG and nerve conduction studies I have done several times over my lifetime. EMG shows severe, chronic denervation etc. My current therapist who is working with me is wonderful. Now that you have a diagnosis, I suggest educating your doctors and therapists as PTS is very rare and very misunderstood. She works with me and is understanding and learning about my condition with genuine care. Not only am I there trying to maintain what I have left (my atrophied muscles will never return unfortunately) but she is also working with my pain. Ultrasound is nice and massage to go with it. I seem to get these attacks every 5 or so years and every time it takes more away. I have had several attacks since I was 9. The flu triggered my first one and others were probably stress related. One very major attack was during the birth of my daughter. I am hopeful that through prayer, meditation, eating right, exercise (the right exercises) and a positive outlook (I imagine my nerves regenerating and my muscles growing) that this disease, or whatever it is, will not consume me. Keep positive, understand your pain and what makes it worse and try and live stress free as stress is a killer. Thank you for your video and congrats on your adventures! Positive thinking will get us all through this. Imagine muscles growing, nerves healing, meditate on that!!!!
Keep up the info man! I'm so dissilutioned with my situation. I have the same symptoms. Tricep pec and lat on the left. Overnight i lost strength and size don't know what to do....
Tony Florida I am scheduled to get an EMG in about 2 weeks. The neurologist was thinking Guillain Barre Syndrome. But I came across PTS as a differential diagnosis. And it’s a100% match in my opinion. I have been struggling with this disorder for almost 3 years. And I had the same problem with doctors. I’m ready to be fixed. I’m going to seek a neurosurgeon after the EMG. I refuse to live like this any longer.
Thanks for posting your story. A few years ago I began feeling pain and weakness in my right upper arm. Along with tremor and neuropathy I was diagnosed almost immediately by my neurologist of long standing (chronic migraine disease) that I too had PTS. It lasted around 2 years and I remitted but had a very atypical case. Most of my recovery was summed up as conversion disorder but I did NO exertional exercises for more than two years. I remitted and things have been normal. When I first had this there weren't stories like this on UA-cam. I'm glad you shared. Lately I've been feeling pain in my brachial plexus along with weakness on my right side including my leg. PTS often coincides with injury but is a rare and complicated neurological disease. I hope at this time you've remitted permanently but I fear I may be returning to my wheelchair soon. All the best from NC.
Thanks for sharing, I was diagnosed with possible Parsonage-Turner Syndrome the pain was intense, I could not rais my arms above my head, finally, the pain went away but it somehow paralyzed both Phrenic Nerves which controls my diaphragm so now I have a Bipap machine to help me breathe at night and its a struggle to walk uphill or climb stairs I am still hoping my body will repair itself. My neurologist was a jerk, he said pretty much nothing they could do, just live with it.
@@TonyFlorida I try to stay active and exercise it does seem to help although as you can imagine when your diaphragm is paralyzed you can still breath but it is painful, and uncomfortable other mucels take over, but exercise still helps the condition. I have talked to doctors and they have no idea what caused it, they just say it could have been a virus.
Thanks for posting. As someone who has suffered from this injury I can relate. Long story short: i got the flu shot this year and about a week or two after i had this intense pain in the back of my neck. Following this pain was an immediate loss of strength and size on my left tricep, left pec and left late. I used to bench 275 for 4-5 reps. My strength was lost literally overnight. It's been 6 months. Some size has come back. Pec is mostly symmetrical on both sides. Left tricep still lagging with a small improvement in size. Currently I can only bench 155lbs 2x which is an improvement since when i initially got injured i couldn't even bench 95lbs. Truth be told not much is known about this injury but from my research i believe it's an autoimmune disorder as a result of getting the flu shot in my case. My immune system had an adverse reaction to it. Left tricep was initially flaccid but now i can flex it. Some improvement but far from 100 percent. Best we can all do is share our experiences amongst each other and figure out how to recover back to normal
Doctors don't know much.The Neurologist should know more.Been through similar.you shouldn't have to travel from one Dr. To another ,your one of many who have.Thats not ok.They should know.Years ago they knew.Try Peter Egoscue exercise programs.He has a couple,of videos and a book called pain free.
I have had this since I was 9 and I refuse to get flu shots as I fear it will trigger a relapse. You just confirmed what I thought. Mine is reoccurring, I've had several episodes in my life. I'm now 42 with winging of both scapula, muscle atrophy and chronic pain, a long list of problems. I absolutely agree it to be immune mediated as the flu triggered one of my episodes. I seem to get an attack every 5 years or so and every time it takes more away from me. Keep your immune system strong, eat right, exercise (within limits), meditate, reduce stress as I am a firm believer that stress will trigger it as well. Narcotics and opiates do not touch the pain and are bad news, I will not take them as they never helped with my nerve pain. Medical marijuana helps along with massage and ultrasound therapy. I have also lived with a heating pad for years. I am by far pain free, but I find comfort in certain things. Currently in O.T. P.T 3 days a week (been through therapy several times throughout my life) along with several rounds of various injections from pain management which seem to help somewhat as my good muscles and low back are suffering due to overcompensation. I guess I'm getting old and cleaning my house hurts... If only I had a maid lol. Good luck
@@dakotasscent It is auto-inflammatory. Mine was caused by the flu shot I took a year ago. I've had three episodes thus far. The second one was the scariest cause my foot was involved. Fortunately, it was the mildest and I was wise enough to take Arcoxia 120mg and cortisole right away.
Thank you for sharing! My better half is going through the same issue and diagnosis. Are there any out there with an autoimmune disorder of some type. Some research points to it, my lady has type 1 diabetes and a history of lupus in the family. I am curious if any that have the condition have any similar background. We’ve been working through doctors and solutions like crazy these last 6 months and it seems like there are few answers or connections, or knowledge in the medical field. I’d never wish this on anyone and I hope all that are struggling through it can find some peace as we try and figure it out. Much love.
Yes drs say there is.I believe it's more of a ''genetic weakness'' and most times a car accident, whiplash injury precedes it. I had a neck injury as a preteen and yrs later MRI scans found a single c1 lesion in my spine, also osteoarthritis. Within 10yrs after that scan new scans found a bone spur compressing my spine which I had decompression surgery. The surgery really helped. I was left with some issues but very stable.till a hit at the side of my head. Now I have these new arm symptoms which started within days after the hit but drs have refused to connnect it to that. Now saying MS or my previous neck issues. Calling bs on these third party insurance drs. Dr Raymond Damadian did a small studies on whiplash injury that preceded MS by 11yrs on average He's my hero. Sad how his MRI invention has been used. I hope your wife gets better and a proper dx.
Hi, It has been 2 years since I suffer from parsonage-turner syndrom. I have also been diagnosed this disease really late ( like 6-8 months ago). I must say that there has been only little improvments since the beginning. I can now use my shoulder almost properly, however the pain is still intense and my muscles get tired really quickly. Without mentionning weird noises when I move a bit my arm, kinda painful and not really pleasant. I've also tried reeducation with specialists but honestly it hasn't really worked out in my case. Sad thing with this thing is that I can't see the end of it since its been so long that I've got this syndrome. Oh and most people don't understand anything about it and don't understand the pain it causes :/ Don't hesitate to share with me some tips if something has worked out with you guys. Good luck
Not sure if you guys cares but if you guys are bored like me during the covid times then you can watch all of the new series on instaflixxer. Have been watching with my girlfriend for the last couple of days =)
The EMG saved me, i had this for 4 years and they didn't know what i have. I wasted so much money and time on things that didn't work and now i am 3/4 weeks in to therapy and i already feel better. hope you also get well mate
How did the EMG save you? I'm getting one done Thursday. I have been like this since 10/30/22. I'm a quarterback and I can remember in the game my shoulder was just done. The following days extreme pain and weakness followed by atrophy of shoulder and bicep. I was extremely active in the gym and on field and court at 42 years old. My life and all that i do has been compromised due to PST! I am believing God I will be healed and I'm so fortunate to have read some of the testimonials about this. If you can please explain how the EMG saved you and what things I should know about it? God bless!
One like for you. Mine set in about four months ago (end of May). Lost the ability to lift my right arm above my head, bicep both hurts and doesn't work right/extremely weak/not well toned. No improvement except to the constant throbbing aspect of the pain. But the shoulder and upper arm remain sore, and the skin across one portion of the arm remains numb. Reading some comments along here from people who have not recovered from this scares me to death. I'm also a T2 diabetic, which made it very difficult for the EMG neurologist to 'hear' what she needed to hear when those tests were done.
@@TonyFlorida Forgot I had written this. The doctors that saw me (and who I now owe ridiculous money to) did absolutely nothing for my condition except call it Brachial Plexopathy. Parsonage-Turner is one form of this. They never figured out what caused it or why, nor had any solid answers for treatment. I've never felt so helpless. I don't know if I gained new muscle mass in another compensating area or if my nerves began responding again, but I seem to have healed since my last post 5 months ago. So I started trying to work my arm on its own. At first it was really hard and seemingly dead, but I have gotten mobility back in it. The bursa area still really hurts and so does the bicep, but I have some muscle tone back and I can lift it above my head again. Next step - being able to actually lift something heavier than a 1 lb weight.
Thank you so much for sharing. Have you experienced much in the way of a recovery since posting this video? Mine set in just over a month ago with no apparent cause. I am extremely lucky because my tricep, pec, bicep, lat, and trapezius are all unaffected. However it seems as though my infrasprinatus has taken a serious hit. I can get most normal range of motion with the affected arm without pain at this point, but my shoulder remains unstable under load. Things like bicep curls or lateral raises can't be accomplished anymore because I lack shoulder stability. I went from benching 225lbs a month ago to a current max of 15lbs per hand with dumbbells as I'm trying to rehab the muscle. Honestly I feel like I can sense the muscle coming back online so to speak, because even this amount of weight was literally impossible for me to work with a few weeks ago. That said, the weakness is so severe, and I can see visual changes in the size of my shoulder taking place already. I am hoping to hear that others have found a way to recover from this dysfunction and I wish you all the best on your recovery.
I have got this through covid vaccine the pain was so intense I nearly collapsed at work due to the shooting pains and spasms I had for nearly an hour. Its like someone is ripping the muscle away from my side by there hands
@@TonyFlorida my doctor says at local surgery pulled muscle. But doctor at hospital says he had same but went away. Its like no other pain I have ever had on sick of work rested over a week and done nothing and it's still there. I am worried it might not go away very worrying indeed as I got took away in ambulance it was crippling pain like nothing I have experienced before.
@@ZrohTempezz it has been with me for months buddy. Sever pain indeed when it goes, do you have like muscle spasam in area that triggers constant nerve pain. It's like someone ripping your muscle of the bone with there hands. I got took away in an ambulance and was told by doctor to rest up do absolutely nothing and was put on strong anti inflammatory tablets and pain killers. It's gone-ish as it can shift on one side of the body but not in as much pain now in that are it feels like a little pulled muscle. but it's because I am in constant doses of anti inflammation tablets that keep it at bay I think. But honestly rest up for 2 weeks I had no option and keep taking the anti inflammatory tablets as the nerves flare up very easy.
Thank you for your explanation. You really got a hard time. I got this sickness for 8 months ago, got a difficult time to get painkiller and other medication. I was "lucky" that my daughter made me to see orthopedic doctor in San Francisco after a month who diagnosed in 5 minutes , also sent me to neuron surgeon for the two tests you mentioned to confirm This meant a lot to me to KNOW what is wrong with me. I got it all crying as a baby running around with no help. Horrific pain. lost muscle function, than 6 months ago one more spell going to hospital getting morphine and other pills. One Mri, all other exams I refused. I do exercises in pool , did not have time for therapy, but was ordered. After the 3 months I am doing everything working hard , taking no pills, but some pain still at back and ialso my hand is hanging down lifeless. especially the the middle and ring and little finger. I try to eat very healthy, using cure-med ,boss-med , B1, also made a test food intolerance, and not to eat what came back highly intolerant. I plan to take therapy, but I see it will take 2-3 years to heal somewhat.My back my shoulder my armpit my elbow my wrists and hand all was affected. Not much muscle in arm, but hand is the worst . hope to heal.Wish for you all of us not to be in pain and heal!
I know this is 2 years later, did you ever try acupuncture? Also, a chiropractor who uses the Nukal sp? Technique (focus on c 1 and c 2? These two things greatly helped me with my symptoms.
I had similar experience, however I had done a circuit session the night before and woke up in intense pain in my neck, with sharp electric shocks shooting down my arms. Long story short, bilateral brachial plexus neuritis. I have since received nerve decompression surgery along the thoracic nerve so now have two scars one on my trapezious and the other down my ribs. I am due to have the same, or possible nerve graft on my right side next month. I am trying to find out how I picked up the condition as it's frustrating because I believe it was due to high intensity physical exercise. If anyone has a similar set of circumstances I would be keen to hear. A top brachial plexus surgeon carried out my procedures, but still can't really confirm that physical exercise was a cause, only probably a trigger to an already contacted nerve virus. Very informative video mate.
I'm not 100 percent sure, but I was doing pull-ups when right after maybe a day or so pain started and progressively got worse, I thought I tore both rotator cuffs I could not rais my arms above my head the pain was intense I went to a Chiropractor and he told me that I had torn rotator cuffs, shortly after I had a hard time breathing when I would lay on my back, and I started passing out at my computer, I just couldn't stay awake, turns out I was diagnosed with posable Parsonage-Turner Syndrome which left both of my Phrenic Nerves paralyzed which make breathing more difficult.
@@frisbydev1783 sorry I'm 2 years late! I think the surgery worked or I just really worked hard to rehabilitate myself and not let this strange relatively unknown syndrome beat me. I hope you get the same success
Dang. I was literally hit at the left side of my head and had shock like pain within days after BUT drs refused to connect it to a clear event. Instead saying MS or disc/nerve roots. btw, happy you had surgery that helped and hope you continue to improve.
How are you feeling now? I've been suffering with this for almost 2 years now. I still get the pain in my scalenes, chest, collarbone, shoulder, triceps, forearm and lat and sometimes in the hand. When it first happened my arm went completely numb. The pain has never been as bad as onset but it won't fully go away and it's still bad pain. It has sort of gone away before though but always comes back, when I rest it feels a little better after a while but then working or doing exercise sets it right off again.
i am fighting to get help in figuring out what is wrong with me!!! no one will listen its been 2 months and im still hurting i am still flexxing non stop my muscles are continuously on fire.. the docotrs say well at least it isnt as bad as it was at first. so you should be getting better. to me it feel like they are waiting for the point of where your body is fuggled and they can make money off your crippled A$$
HI Tony, thanks for share it. have you recovered? I have this syndrome 4 months ago. with a winged scapula, and lot of pain. no therapy relieves me, I feel worse than the first month. Any recommendations? Specialists told me that I have a virus so I am trying to fight it. thanks for any recommendations
I still have mild symptoms, but I feel much better than I did before. Avoiding situations that aggrivate it and having a positive outlook seemed to help more then "physical" therapy
I got diagnosed with PTS 4 months ago, luckily i don’t have a lot of pain anymore but i’m still limited by how much i can use my tricep, my shoulder looks also totally different from my other one (my left shoulder is the one where it is located). I’m 17 now and in my last year of high school, the thing now is that i can’t finish it because i can’t do my internship if i can’t move my arm... my fysio therapist (who is see every 2 days) didn’t know anything about it and i read a lot of things here like swimming, i would want to give it a try but because of corona my local swimming pools are closed, the limitations that it gives me also make me really depressed. I hope this will get better soon
From my experience and from the experience of some of the other commenters on this video, it will get better with time. My hope is that since you are so young and still growing, you will overcome this in a matter of time. Please stay optimistic. Your attitude has a lot to do with how your body feels!
@@Dorenna It started getting better after 10 months, then i got some feeling and a little bit of movement after also foing fysio, after alot of time it started to fully go away but since then i had 2 times where i felt alot of pain again, it never got to that point again luckily but it was scary for sure. I also studied for something else and now i have a fulltime job
I've read some possible healing properties of a ketogenic diet for PTS. I was diagnosed 4 months ago. Right thumb is still numb...can't fully reach over my head with right arm... overall energy is still quite low... I struggle with basic daily activities... has anyone tried keto to help healing? Thanks for this video brother
Any updates? did you make a full recovery? an idiot chiropractor fucked up my neck so bad to the point where i have this now and i have deltoid atrophy. is there anything can be done to get back to normal?
I have just learned I have the PTS (bilateral) and have had it many yrs. I have never heard of it and I guess my doctors haven't either. I have lots of them too, in 4 states. A radiologist mentioned it might be this. I read up on it and was reading about myself. The agonizingly intense pain this last yesr drove me to get help but it took months to get this diagnosis. I have adult onset scoliosis but found I have to have both shoulders replaced! the PTS made to slow down and then have scoliosis revision surgery(ies) . Ain't this living?
@@TonyFlorida Whats the prognosis? Were you told that you will make full recovery? Im told Im going to recover fully, with no surgery needed. Its been 1 year since diagnosis but Ive felt the symptoms for 1 year before going to the doctor. Its a slow journey but sometimes I feel like Im not getting better.. There are good times and bad times... its so inconsistent.. Sorry that its taken you so long. I sincerely hope things are looking up for you.
Do you ever have any pain in your throat? And just to the side of your upper spine ? And under your collarbone ? Do you ever get bad headaches from this? What positions do you find help ease the pain? If any....? I too suffer from this. It’s the worse pain I have ever felt in my life.
Omg. My scapula has been up slightly just a nuisance for some time. But since yesterday I cant use my shoulder or arm. I have to stick my elbow bent back to my side and out past my back to get my blade to sit right or it hurts. The sling from store is too big I'm ready to tape my arm :( I have inflammation issues and other diseases but neuro issues have been on the rise for 3 yrs now.
@@TonyFlorida sorry to hear that, but you seem to make the best of it and are having some great adventures. Good for you. So as long as you avoid those no pain or symptoms?
hello! my palms and my feet starting tingling and feels like i’m hitting my funny bone. it started initially with the first dose of moderna but got worse after the second dose. it’s been going since april and have lost a lot of muscle including finger strength. do you think this could be it because my neurologist has no clue (even did an emg)
Has anyone here suffered withwristdrop after it? I went undiagnosed for 8 full months. Its an absolute disgrace! Just seen a new surgeon and he think thinks i had that and radialnerve palsy its a result of it. Im due to have brain scan and arm mri...scared...confused...and why me?are the things am feeling.
@@TonyFlorida I feel I was in a place of shock when I wrote that comment-an angry one too -but Im getting over the shock and ready to tackle this! Thank you for your kind words&videos!
I did not fully recover from PTS. I know this isn't probably what you want to hear (especially if you have PTS yourself), but the single thing that gave me the most relief was to avoid the activities that aggravated my symptoms. I also found that my symptoms got worse when I was stressed, so by reducing my stress though things like yoga helped.
I'm currently diagnosed with PTS since Sept. has anyone out there filed for disability? Even tho I'm past the acute phase I worked in a restaurant and can't do anything like before PTS. Plz let me know
Awe... I got to work tomorrow, in restuarant, plan on just bagging to go orders but if I cant sling my arm I think I'm going to have to tape my arm. Resting arm my scapula sticks out and hurts. Tape me up like a chicken wing and see how it goes.
I would say you have, Hereditary neuralgic amyotrophy.l have had this for 18years.l was pregnant my first episode affected both arms,l have had it 5times,my 2nd last happened 4years ago my scapula stuck out and arm dropped.lt never recovered and l had another episode last sept but still have pain.l had 2 nerve tests both positive. My son also had an episode 1year ago. Doctors are so lack in knowledge.l told my doctor what l had.There needs to be quicker diagnosis.
I am reading up constantly,trying to collect all the info l know about this.l went to a chiropractor too for my scapula that was sticking out.A quarter of people who have a brachial neuritis ends up as the Hereditary form (HNA) I also have Erythomyalila,and small fiber neuropathy which l was diagnosed with 2years ago,but have had it a lot longer.
Mine too is HNA. I've had it since I was 9 and a now 42 and left with both winged scapula and a muscle atrophy on both arms. I have a long list of problems from having reoccurring episodes as every time I have an attack, more is taken away. Very painful disease. I too had an attack during the birth of my daughter. It might have been one of my worst attacks. I'm sorry you went through that as I know what that is like being a mom for the first time and having to deal with the pain. My baby was worth it though lol. I did not know it was hereditary until after the birth. I do pray she will never have this. She is 13 now and healthy, no signs of it and I believe and hope she will not get this. Sorry your son had an attack. Hopefully it was a quick one, poor guy.
@@TonyFlorida Thanks for your quick reply on scanner! Really, Tony, watch that Dr. Sarno vid. The ER doc told me I'd never exercise again in 2005! Here we are in 2022 and I'm on my way to play racquetball!! Dr Sarno is a Genius. All I did was read his book!
I just got done watching it. Mind blown. I have actually noticed a correlation between my stress and my pain. Think that's why when I quit my job my pain subsided significantly. Thank you for the recommendation! I just downloaded his audiobook "Healing Back Pain". Is that the one?
@@TonyFlorida Yes!! And do exactly what he tells you! I remember back in 2005, I had a stairmaster upstairs and normally I did 20 min, 100 Floors. One of the things he said you must do is go about doing whatever you formerly did. OH, IT hurt!!! But, day by day I added onto it a minute at a time....then one day, miracle, nothing hurt. If you read some of the reviews on amazon about the book, you will see many success stories. Bottom Line: if you don't have a broken bone or tumor, chances are it is stress related. And like the atty. said at the end, 'yes, sometimes it flairs up, but I now know it will go away...and it does." So true! I have had a few 'episodes' since 2005....but it always goes away. Funny thing, If i watch that vid a few times--it's like my medicine!! :D Keep me posted!
Tony Florida : I’ve had chondrites for years! Broken sternum,3 broken ribs from 1986 car wreck. 1 year ago L4/L5 fused 4 screws,2 Rods. C6/C7 gone no screws. 2 weeks ago so,e up with side of left pec muscle, armpit muscle and trap muscle killing me! Then started the hand and forearm tingling. I was told by doctor friend about TOS and Parsonage Syndrome. I’m going Thursday to an orthopedic and hope to get a steroid shot and toradol shot. Have you had shots and do they help? I can’t sleep so uncomfortable! Went through those operations and now this, I’m really at my end.
The orthopedic surgeon can't do anything besides surgery. Your shoulders are hunching while the story forms a circle. As a fund scientist, do you honestly believe healthcare is efficient? Please contact me Asap . Darien
OMG!! I will keep you in my prayers because I know how depressing and what an impact this has on your whole entire body. I have never known pain like this until I got injured on my job as a laundry aide and I have been through everything you have experienced and no one understands that doing simple things is challenging and extremely painful. I have been on pain medication which is a huge trigger for me but nothing has worked and been to countless specialists, physical therapies, and now I need a cast made by my occupational therapists. I have had the emg tests and cat scans and MRI's but nothing is found and the nueroligist says I have parsonage turner syndrome and i'm just stuck with the pain and having to do exercises to help eliviate the symptoms. I hope you will make a full recovery and be able to get back to living your life and using both hands and arms without pain, numbness, or anything else that will re-injur your shoulder again. Take it easy and I hope you heal and stay strong, don't give up, no matter what keep on going forward.
Thank you for sharing your story. This is my fourth year living with brachial neuritis and was only diagnosed last year after a similar situation to yours. Mine affects my right elbow which is constantly numb and tender, the top of my shoulder, base of my neck and rotator cuff. I still have muscle atrophy but I've noticed a slight improvement in the last 4 months on how much I can use my arm. Been told I will probably never have full use again but I remain positive and take small steps which I think is key to recovering from this horrible disease.
I really wish you all the best in your recovery and hope it continues to improve.
Did you have any kind of vaccine or flu shot preceding the start of symptoms?
i read up that if it isnt treated right away, and not being worked on wtithen 4 months it makes it worse.. so maybe these docotors are just waiting for a year before they help you so they can make money off your pain
Thank you for making me feel like I’m not crazy.
I lift. Had this 3 years ago. I'm finally back to about 80% on the left side. If anyone is wondering, you can usually get some of your pec back, but the lat and tricep are more stubborn. Keep the weight light or you will make it worse or develop other imbalances because of it! Ditch the barbell, it will only frustrate you. Dumbbells are your friend! If you can, focus on bodyweight stuff, traditional pull-ups and dips are great for rehabbing the affected areas, if you have the strength to do sets of 8-10
I’m about a year into my recovery and still can Barely do a push up, I was a very active 21 year old and did a lot of weights and now can barely push my self up, is there something else I can do to help this progress? Many thanks
how are you doing now? and can u tell me if u had mild pain and nerve sensations after acute phase, cause i got it from intense workout i believe and now im doing reabilitation
No swear Hi, I had very little pain after the acute phase, just severe weakness in my left shoulder and tricep, and weakness in my lat and pec. Sounds like you could possibly have a pinched nerve.. did it happen in the middle of your workout or afterwards?
Thanks a lot for that info bro. I lift to and I just got this about 1 month ago. While the pain has gone. The movement is still restricted.
I've been suffering with this for almost 2 years now. I still get the pain in my scalenes, chest, collarbone, shoulder, triceps, forearm and lat and sometimes the pain is in the hand. When it first happened my arm went completely numb. It goes away and comes back, when I rest it feels a little better after a while but then working or doing exercise sets it right off again. When will this recover fully and what do I need to do???
Thank you for sharing your story. I have had the same experience with the doctors. Since it is a super rare disease doctors most probably have never heard about it. It takes ages to get diagnosed. But I must say among all the comments I have read mine was the worst experience. I spent six months in a hospital and the nerve damage had already been severe by the time I was hospitalised. Luckily the nerves have started reinnervating and I am hoping it would help a little with the pain. The painkillers I take make me forget everything and everything blurry. My mind doesn't work properly or at least I feel that way. I must also say none of you has mentioned the pschological side of this. I have been told that I need theraphy because of the extreme pain I have been suffering from and having no life for the past seven months. I wish you all good luck with your recoveries.
Yes it does and I don't think I have the power to cope any longer. So what did the doctors teall you to do in the end other than waiting? Anything?? Anyone??
Thankyou. By now hope you are improving.
I am 76 and am just recovering from the acute phase one.
I had a classic presentation, male, right arm, intense pain in right shoulder and arm just as I was waking up in the morning. My right elbow became painful and I lost feeling and function of the two right most fingers of my right hand. Wiping my bum and doing up shoe laces became next to impossible.
For me this continuous intense pain phase lasted for four days. The doctors tried various pain medication, the only one that worked somewhat was codiene but it left me very nauseous. In the end I chose the pain.
On the fourth day the pain reverted to waves, where for an hour or two I was pain free. I have been using these pain free periods to try and exercise my arm.
Given my age I was initially treated for heart attack but it quickly became clear my heart was OK.
When my PTS diagnosis was confirmed at day three, my GP gave me a hug. He said that was because it was about the best thing he could do for me, I would just have to ride it out and do what I could to limit long term damage.
In terms of limiting the pain, I have found posture helps, flat on back on the floor with hands clasped over my head.
Heat therapy using wheat bags has helped a lot especially now the pain is in waves. I found these applied to the painful parts of shoulder and arm help to extend the pain free period.
Given my acute phase only lasted four days I am hopeful for a fairly quick recovery.
My heart goes out to those suffering this agonising disease, in particular those stuck in-phase one for protracted periods.
My third neurologist finally told me he believed I had brachial plexopathy after the previous two were hung up on a neck MRI showing degenerative disc disease. He didn't say Parsonage Turner but considering there was no traumatic cause and it just appeared randomly in someone who does a lot of desk work I'm pretty certain this is what he meant. I had the beginning of symptoms just like you in the right arm. It slowly crept up from my fingers making everyone think it was carpal tunnel. Then they thought it was radial after it was in my forearm and causing minor wrist drop. After it entered my shoulder they just kept suggesting PT and didn't know what to do when it didn't improve. It's been about 3.5 years since the pain started in my fingers and everywhere it goes seems to take forever to recover. I've been having the shoulder pain since Aug 2017 myself and it may be slowly resolving finally (big maybe, but I'll pray). After a million attempts for ergo devices at work I just wanted to cry. Using a computer mouse for my engineering work is complete hell so that's about 50 hours a week I spend in misery.
Maybe there is a light at the end of the tunnel. My back spasms seem controllable by dry needling but residual perceived weakness remains on my shoulder. I'm told my right arm (the affected arm) is stronger than the left by everyone doing a diagnostic now after 3 months of PT but I sure feel weak on it. I'm trying to enjoy the outdoors and start weight lifting but wow the right arm gets tired quick. I get tired of everyone asking why I don't just take advil for it. I think the worst part is except for one parent everyone just says it's my fault for not being athletic enough. Someone has to always be at fault I suppose.
Maybe I don't have Parsonage Turner but I sure fit the description and your story to a T. My neck gets stiff sometimes but I can't do any spurling test and cause the symptoms to worsen, really don't think it's cervical.
I rambled but I really feel for you and I know exactly what you're going through. This is extremely difficult to bear and I can only pray that is in fact temporary, even if temporary is measured over half a decade.
@@TonyFlorida I'm still working and trying to be active. Need the insurance and money for alimony. Just went to the range this weekend in fact though holding anything in front of me becomes quite uncomfortable. Even a friend showing me his new VR station was painful for hold my hand above my waist.
I saw a 4th neuro who focused on old EMGs which would seem to indicate a pinched nerve in the neck, though the exact level seems to switch depending on who I ask. Going for a new MRI shortly. My other neuro confirmed he did mean 'Parsonage Turner' and even with the EMGs he still insisted he believed it was not a pinched neck nerve. I'm stuck between a diagnosis that requires waiting it out or one that requires surgery. Very frustrating. I hope you're continuing to improve, whichever condition I have I empathize with your pain and struggle. I've become one of those problem patients and I can sense the resentment from my doctors. I pray, do my PT, and try to take gabapentin in the hopes that I can have some of my old life back.
I think you've had more significant muscle weakness than I have, but you have had pain starting about the same time as me. Mine continues along the bottom of my right arm (triceps) and into the armpit/back. Feels like a nerve is being stretched hard when I raise and bend my arm. My doctor did say that despite what the internet says, brachial plexopathy pain can in fact last much longer than 2 weeks. His disagreement with the other 3 neuros is that 'other doctors usually don't test for it.' I don't know which diagnosis I prefer to be honest.
Sorry for the novel, I understand your pain and I sincerely hope you're on the up slope now.
I first listened to your video in the car. I just noticed you rub the same area of pain and weakness that I have in your right arm. Have to admit the FMLA is very tempting sometimes.
Hello. I was diagnosed when I was 9 years old. I have a very rare reoccurring, extremely painful case of HNA (Parsonage Turner Syndrome). I am now 42 and am left with chronic pain and muscle atrophy. I have been through a great amount of different doctors and specialists throughout my life and am now with the University of Miami with a team of doctors. I am currently doing another round of P.T. and O.T. and pain management. I refuse now to take opiates and narcotic drugs as they do not touch the pain. I have had several rounds of various injections and found some relief as my "good" muscles are now painful and my back is suffering due to overcompensation. I also have winging of both my scapula. EMG and nerve conduction studies I have done several times over my lifetime. EMG shows severe, chronic denervation etc. My current therapist who is working with me is wonderful. Now that you have a diagnosis, I suggest educating your doctors and therapists as PTS is very rare and very misunderstood. She works with me and is understanding and learning about my condition with genuine care. Not only am I there trying to maintain what I have left (my atrophied muscles will never return unfortunately) but she is also working with my pain. Ultrasound is nice and massage to go with it. I seem to get these attacks every 5 or so years and every time it takes more away. I have had several attacks since I was 9. The flu triggered my first one and others were probably stress related. One very major attack was during the birth of my daughter. I am hopeful that through prayer, meditation, eating right, exercise (the right exercises) and a positive outlook (I imagine my nerves regenerating and my muscles growing) that this disease, or whatever it is, will not consume me. Keep positive, understand your pain and what makes it worse and try and live stress free as stress is a killer. Thank you for your video and congrats on your adventures! Positive thinking will get us all through this. Imagine muscles growing, nerves healing, meditate on that!!!!
100% agree with you that your attitude plays a huge part in recovery. All the best to you as well!
Keep up the info man! I'm so dissilutioned with my situation. I have the same symptoms. Tricep pec and lat on the left. Overnight i lost strength and size don't know what to do....
You just described my exact problem. Even down to the rib difference!! And the same path I’ve been on. Thank you!!
Tony Florida I am scheduled to get an EMG in about 2 weeks. The neurologist was thinking Guillain Barre Syndrome. But I came across PTS as a differential diagnosis. And it’s a100% match in my opinion. I have been struggling with this disorder for almost 3 years. And I had the same problem with doctors. I’m ready to be fixed. I’m going to seek a neurosurgeon after the EMG. I refuse to live like this any longer.
@@Mom_Luvs_Tech what your update??? Gotten back to 100%? Frustrated? Im just depressed and over it
@@steveshao24-77 me2
Thanks for posting your story. A few years ago I began feeling pain and weakness in my right upper arm. Along with tremor and neuropathy I was diagnosed almost immediately by my neurologist of long standing (chronic migraine disease) that I too had PTS. It lasted around 2 years and I remitted but had a very atypical case. Most of my recovery was summed up as conversion disorder but I did NO exertional exercises for more than two years. I remitted and things have been normal. When I first had this there weren't stories like this on UA-cam. I'm glad you shared. Lately I've been feeling pain in my brachial plexus along with weakness on my right side including my leg. PTS often coincides with injury but is a rare and complicated neurological disease. I hope at this time you've remitted permanently but I fear I may be returning to my wheelchair soon. All the best from NC.
I got it from a flu shot.
Thanks for sharing, I was diagnosed with possible Parsonage-Turner Syndrome the pain was intense, I could not rais my arms above my head, finally, the pain went away but it somehow paralyzed both Phrenic Nerves which controls my diaphragm so now I have a Bipap machine to help me breathe at night and its a struggle to walk uphill or climb stairs I am still hoping my body will repair itself. My neurologist was a jerk, he said pretty much nothing they could do, just live with it.
@@TonyFlorida I try to stay active and exercise it does seem to help although as you can imagine when your diaphragm is paralyzed you can still breath but it is painful, and uncomfortable other mucels take over, but exercise still helps the condition. I have talked to doctors and they have no idea what caused it, they just say it could have been a virus.
@@kirkm63 I hope you're better. I My neurologist was a jerk also.
Thanks for posting. As someone who has suffered from this injury I can relate. Long story short: i got the flu shot this year and about a week or two after i had this intense pain in the back of my neck. Following this pain was an immediate loss of strength and size on my left tricep, left pec and left late. I used to bench 275 for 4-5 reps. My strength was lost literally overnight. It's been 6 months. Some size has come back. Pec is mostly symmetrical on both sides. Left tricep still lagging with a small improvement in size. Currently I can only bench 155lbs 2x which is an improvement since when i initially got injured i couldn't even bench 95lbs. Truth be told not much is known about this injury but from my research i believe it's an autoimmune disorder as a result of getting the flu shot in my case. My immune system had an adverse reaction to it. Left tricep was initially flaccid but now i can flex it. Some improvement but far from 100 percent. Best we can all do is share our experiences amongst each other and figure out how to recover back to normal
you herniated a disk bud
Doctors don't know much.The Neurologist should know more.Been through similar.you shouldn't have to travel from one Dr. To another ,your one of many who have.Thats not ok.They should know.Years ago they knew.Try Peter Egoscue exercise programs.He has a couple,of videos and a book called pain free.
I have had this since I was 9 and I refuse to get flu shots as I fear it will trigger a relapse. You just confirmed what I thought. Mine is reoccurring, I've had several episodes in my life. I'm now 42 with winging of both scapula, muscle atrophy and chronic pain, a long list of problems. I absolutely agree it to be immune mediated as the flu triggered one of my episodes. I seem to get an attack every 5 years or so and every time it takes more away from me. Keep your immune system strong, eat right, exercise (within limits), meditate, reduce stress as I am a firm believer that stress will trigger it as well. Narcotics and opiates do not touch the pain and are bad news, I will not take them as they never helped with my nerve pain. Medical marijuana helps along with massage and ultrasound therapy. I have also lived with a heating pad for years. I am by far pain free, but I find comfort in certain things. Currently in O.T. P.T 3 days a week (been through therapy several times throughout my life) along with several rounds of various injections from pain management which seem to help somewhat as my good muscles and low back are suffering due to overcompensation. I guess I'm getting old and cleaning my house hurts... If only I had a maid lol. Good luck
@@dakotasscent
It is auto-inflammatory.
Mine was caused by the flu shot I took a year ago.
I've had three episodes thus far. The second one was the scariest cause my foot was involved. Fortunately, it was the mildest and I was wise enough to take Arcoxia 120mg and cortisole right away.
@@akowned1 glad to see another doctor
Thank you for sharing! My better half is going through the same issue and diagnosis. Are there any out there with an autoimmune disorder of some type. Some research points to it, my lady has type 1 diabetes and a history of lupus in the family. I am curious if any that have the condition have any similar background. We’ve been working through doctors and solutions like crazy these last 6 months and it seems like there are few answers or connections, or knowledge in the medical field. I’d never wish this on anyone and I hope all that are struggling through it can find some peace as we try and figure it out. Much love.
Yes drs say there is.I believe it's more of a ''genetic weakness'' and most times a car accident, whiplash injury precedes it. I had a neck injury as a preteen and yrs later MRI scans found a single c1 lesion in my spine, also osteoarthritis. Within 10yrs after that scan new scans found a bone spur compressing my spine which I had decompression surgery. The surgery really helped. I was left with some issues but very stable.till a hit at the side of my head. Now I have these new arm symptoms which started within days after the hit but drs have refused to connnect it to that. Now saying MS or my previous neck issues. Calling bs on these third party insurance drs. Dr Raymond Damadian did a small studies on whiplash injury that preceded MS by 11yrs on average He's my hero. Sad how his MRI invention has been used. I hope your wife gets better and a proper dx.
Hi,
It has been 2 years since I suffer from parsonage-turner syndrom. I have also been diagnosed this disease really late ( like 6-8 months ago).
I must say that there has been only little improvments since the beginning. I can now use my shoulder almost properly, however the pain is still intense and my muscles get tired really quickly. Without mentionning weird noises when I move a bit my arm, kinda painful and not really pleasant.
I've also tried reeducation with specialists but honestly it hasn't really worked out in my case.
Sad thing with this thing is that I can't see the end of it since its been so long that I've got this syndrome.
Oh and most people don't understand anything about it and don't understand the pain it causes :/
Don't hesitate to share with me some tips if something has worked out with you guys.
Good luck
Not sure if you guys cares but if you guys are bored like me during the covid times then you can watch all of the new series on instaflixxer. Have been watching with my girlfriend for the last couple of days =)
@Jose Elisha yea, have been watching on instaflixxer for since december myself :)
@Jose Elisha yea, I've been watching on instaflixxer for months myself =)
What your update? I still havent gotten diagnosis yet but im hoping i didnt injury my brachial plexus after a scooter accident
Thank you for the information. I have been dealing with this issue for over a year.
The EMG saved me, i had this for 4 years and they didn't know what i have. I wasted so much money and time on things that didn't work and now i am 3/4 weeks in to therapy and i already feel better. hope you also get well mate
Happy to hear that you're feeling better and on the road to recovery!
Whic therapy?? thanks
@@javiera.m.8422 physio, but i got one from the hospital who is “specialized” in recovery of the serratus anterior
How did the EMG save you? I'm getting one done Thursday. I have been like this since 10/30/22. I'm a quarterback and I can remember in the game my shoulder was just done. The following days extreme pain and weakness followed by atrophy of shoulder and bicep. I was extremely active in the gym and on field and court at 42 years old. My life and all that i do has been compromised due to PST! I am believing God I will be healed and I'm so fortunate to have read some of the testimonials about this. If you can please explain how the EMG saved you and what things I should know about it? God bless!
One like for you. Mine set in about four months ago (end of May). Lost the ability to lift my right arm above my head, bicep both hurts and doesn't work right/extremely weak/not well toned. No improvement except to the constant throbbing aspect of the pain. But the shoulder and upper arm remain sore, and the skin across one portion of the arm remains numb.
Reading some comments along here from people who have not recovered from this scares me to death. I'm also a T2 diabetic, which made it very difficult for the EMG neurologist to 'hear' what she needed to hear when those tests were done.
@@TonyFlorida Forgot I had written this. The doctors that saw me (and who I now owe ridiculous money to) did absolutely nothing for my condition except call it Brachial Plexopathy. Parsonage-Turner is one form of this. They never figured out what caused it or why, nor had any solid answers for treatment. I've never felt so helpless.
I don't know if I gained new muscle mass in another compensating area or if my nerves began responding again, but I seem to have healed since my last post 5 months ago. So I started trying to work my arm on its own. At first it was really hard and seemingly dead, but I have gotten mobility back in it. The bursa area still really hurts and so does the bicep, but I have some muscle tone back and I can lift it above my head again. Next step - being able to actually lift something heavier than a 1 lb weight.
Thank you so much for sharing. Have you experienced much in the way of a recovery since posting this video? Mine set in just over a month ago with no apparent cause. I am extremely lucky because my tricep, pec, bicep, lat, and trapezius are all unaffected. However it seems as though my infrasprinatus has taken a serious hit. I can get most normal range of motion with the affected arm without pain at this point, but my shoulder remains unstable under load. Things like bicep curls or lateral raises can't be accomplished anymore because I lack shoulder stability. I went from benching 225lbs a month ago to a current max of 15lbs per hand with dumbbells as I'm trying to rehab the muscle. Honestly I feel like I can sense the muscle coming back online so to speak, because even this amount of weight was literally impossible for me to work with a few weeks ago. That said, the weakness is so severe, and I can see visual changes in the size of my shoulder taking place already. I am hoping to hear that others have found a way to recover from this dysfunction and I wish you all the best on your recovery.
I have got this through covid vaccine the pain was so intense I nearly collapsed at work due to the shooting pains and spasms I had for nearly an hour. Its like someone is ripping the muscle away from my side by there hands
Sounds like a few people have experienced this after covid vax
@@TonyFlorida my doctor says at local surgery pulled muscle. But doctor at hospital says he had same but went away. Its like no other pain I have ever had on sick of work rested over a week and done nothing and it's still there. I am worried it might not go away very worrying indeed as I got took away in ambulance it was crippling pain like nothing I have experienced before.
@@bikerboys1969 has it gone away? i had the second moderna dose and experience similar symptoms
@@ZrohTempezz it has been with me for months buddy. Sever pain indeed when it goes, do you have like muscle spasam in area that triggers constant nerve pain. It's like someone ripping your muscle of the bone with there hands. I got took away in an ambulance and was told by doctor to rest up do absolutely nothing and was put on strong anti inflammatory tablets and pain killers. It's gone-ish as it can shift on one side of the body but not in as much pain now in that are it feels like a little pulled muscle. but it's because I am in constant doses of anti inflammation tablets that keep it at bay I think. But honestly rest up for 2 weeks I had no option and keep taking the anti inflammatory tablets as the nerves flare up very easy.
Mine feels like an electric shock between the shoulder and elbow
Thank you for your explanation. You really got a hard time. I got this sickness for 8 months ago, got a difficult time to get painkiller and other medication. I was "lucky" that my daughter made me to see orthopedic doctor in San Francisco after a month who diagnosed in 5 minutes , also sent me to neuron surgeon for the two tests you mentioned to confirm
This meant a lot to me to KNOW what is wrong with me. I got it all crying as a baby running around with no help. Horrific pain. lost muscle function, than 6 months ago one more spell going to hospital getting morphine and other pills.
One Mri, all other exams I refused. I do exercises in pool , did not have time for therapy, but was ordered. After the 3 months I am doing everything working hard , taking no pills, but some pain still at back and ialso my hand is hanging down lifeless. especially the the middle and ring and little finger. I try to eat very healthy, using cure-med ,boss-med , B1, also made a test food intolerance, and not to eat what came back highly intolerant. I plan to take therapy, but I see it will take 2-3 years to heal somewhat.My back my shoulder my armpit my elbow my wrists and hand all was affected. Not much muscle in arm, but hand is the worst . hope to heal.Wish for you all of us not to be in pain and heal!
I am suffering from the same bro. I feel you.
Feel better 🙏
I know this is 2 years later, did you ever try acupuncture? Also, a chiropractor who uses the Nukal sp? Technique (focus on c 1 and c 2?
These two things greatly helped me with my symptoms.
I've been told to try acupuncture by multiple people, someone recently, and now you. I'm gonna give it a try
I had similar experience, however I had done a circuit session the night before and woke up in intense pain in my neck, with sharp electric shocks shooting down my arms. Long story short, bilateral brachial plexus neuritis. I have since received nerve decompression surgery along the thoracic nerve so now have two scars one on my trapezious and the other down my ribs. I am due to have the same, or possible nerve graft on my right side next month. I am trying to find out how I picked up the condition as it's frustrating because I believe it was due to high intensity physical exercise. If anyone has a similar set of circumstances I would be keen to hear. A top brachial plexus surgeon carried out my procedures, but still can't really confirm that physical exercise was a cause, only probably a trigger to an already contacted nerve virus. Very informative video mate.
I'm not 100 percent sure, but I was doing pull-ups when right after maybe a day or so pain started and progressively got worse, I thought I tore both rotator cuffs I could not rais my arms above my head the pain was intense I went to a Chiropractor and he told me that I had torn rotator cuffs, shortly after I had a hard time breathing when I would lay on my back, and I started passing out at my computer, I just couldn't stay awake, turns out I was diagnosed with posable Parsonage-Turner Syndrome which left both of my Phrenic Nerves paralyzed which make breathing more difficult.
Did this surgery give you any relief? Would you do it again knowing what your outcome will be?
@@frisbydev1783 sorry I'm 2 years late! I think the surgery worked or I just really worked hard to rehabilitate myself and not let this strange relatively unknown syndrome beat me. I hope you get the same success
Dang. I was literally hit at the left side of my head and had shock like pain within days after BUT drs refused to connect it to a clear event. Instead saying MS or disc/nerve roots. btw, happy you had surgery that helped and hope you continue to improve.
How are you feeling now? I've been suffering with this for almost 2 years now. I still get the pain in my scalenes, chest, collarbone, shoulder, triceps, forearm and lat and sometimes in the hand. When it first happened my arm went completely numb. The pain has never been as bad as onset but it won't fully go away and it's still bad pain. It has sort of gone away before though but always comes back, when I rest it feels a little better after a while but then working or doing exercise sets it right off again.
i am fighting to get help in figuring out what is wrong with me!!! no one will listen its been 2 months and im still hurting i am still flexxing non stop my muscles are continuously on fire.. the docotrs say well at least it isnt as bad as it was at first. so you should be getting better. to me it feel like they are waiting for the point of where your body is fuggled and they can make money off your crippled A$$
HI Tony, thanks for share it. have you recovered? I have this syndrome 4 months ago. with a winged scapula, and lot of pain. no therapy relieves me, I feel worse than the first month. Any recommendations? Specialists told me that I have a virus so I am trying to fight it. thanks for any recommendations
I still have mild symptoms, but I feel much better than I did before. Avoiding situations that aggrivate it and having a positive outlook seemed to help more then "physical" therapy
Hello this is happening to me. Thank you for sharing. How are you these days?
Any news tips you can give now?
Just found out I have this!
I got diagnosed with PTS 4 months ago, luckily i don’t have a lot of pain anymore but i’m still limited by how much i can use my tricep, my shoulder looks also totally different from my other one (my left shoulder is the one where it is located). I’m 17 now and in my last year of high school, the thing now is that i can’t finish it because i can’t do my internship if i can’t move my arm... my fysio therapist (who is see every 2 days) didn’t know anything about it and i read a lot of things here like swimming, i would want to give it a try but because of corona my local swimming pools are closed, the limitations that it gives me also make me really depressed. I hope this will get better soon
From my experience and from the experience of some of the other commenters on this video, it will get better with time. My hope is that since you are so young and still growing, you will overcome this in a matter of time. Please stay optimistic. Your attitude has a lot to do with how your body feels!
how is your condition now 😢
@@Dorenna It started getting better after 10 months, then i got some feeling and a little bit of movement after also foing fysio, after alot of time it started to fully go away but since then i had 2 times where i felt alot of pain again, it never got to that point again luckily but it was scary for sure. I also studied for something else and now i have a fulltime job
Was the brachial plexe severely damaged as seen on the nerve test, or was it mild or moderate?
I've read some possible healing properties of a ketogenic diet for PTS. I was diagnosed 4 months ago. Right thumb is still numb...can't fully reach over my head with right arm... overall energy is still quite low... I struggle with basic daily activities... has anyone tried keto to help healing? Thanks for this video brother
Any updates? did you make a full recovery?
an idiot chiropractor fucked up my neck so bad to the point where i have this now and i have deltoid atrophy.
is there anything can be done to get back to normal?
I still have symptoms today but less mild. I found that avoiding aggravating situations helps, but time helped the most
@@TonyFlorida do you recommend any exercises or drugs that helped
Because the only solution im thinking is suicide
can you do an update after 5 years how you experienced this burden and if you are okay now? thx
5 y later, i am still not okay.
How much money did you spend on specialists?
I have just learned I have the PTS (bilateral) and have had it many yrs. I have never heard of it and I guess my doctors haven't either. I have lots of them too, in 4 states. A radiologist mentioned it might be this. I read up on it and was reading about myself. The agonizingly intense pain this last yesr drove me to get help but it took months to get this diagnosis. I have adult onset scoliosis but found I have to have both shoulders replaced! the PTS made to slow down and then have scoliosis revision surgery(ies) . Ain't this living?
God Bless.
God bless you. Keep a positive attitude Lynda
Hey how long did it take for you to recover? Did you recover at all?
@@TonyFlorida Whats the prognosis? Were you told that you will make full recovery?
Im told Im going to recover fully, with no surgery needed. Its been 1 year since diagnosis but Ive felt the symptoms for 1 year before going to the doctor.
Its a slow journey but sometimes I feel like Im not getting better.. There are good times and bad times... its so inconsistent..
Sorry that its taken you so long. I sincerely hope things are looking up for you.
Do you ever have any pain in your throat? And just to the side of your upper spine ? And under your collarbone ? Do you ever get bad headaches from this? What positions do you find help ease the pain? If any....? I too suffer from this. It’s the worse pain I have ever felt in my life.
I have not had pain in these areas. Sounds awful :(
Omg. My scapula has been up slightly just a nuisance for some time. But since yesterday I cant use my shoulder or arm. I have to stick my elbow bent back to my side and out past my back to get my blade to sit right or it hurts. The sling from store is too big I'm ready to tape my arm :(
I have inflammation issues and other diseases but neuro issues have been on the rise for 3 yrs now.
Is your pain any better now? 😊
Hi- sorry about having to deal with this. Do you mind sharing what your EMG/NCS said that pointed to brachial plexopathy?
@@TonyFlorida Thanks for the reply -- just now saw this. How is the PTS nowadays?
@@TonyFlorida sorry to hear that, but you seem to make the best of it and are having some great adventures. Good for you. So as long as you avoid those no pain or symptoms?
hello!
my palms and my feet starting tingling and feels like i’m hitting my funny bone. it started initially with the first dose of moderna but got worse after the second dose. it’s been going since april and have lost a lot of muscle including finger strength. do you think this could be it because my neurologist has no clue (even did an emg)
I'm sorry to hear that David
I have the same system you do pain has finally gone, weak left arm doctor don't know began to excise a little
That's great progress!
Has anyone here suffered withwristdrop after it? I went undiagnosed for 8 full months. Its an absolute disgrace! Just seen a new surgeon and he think thinks i had that and radialnerve palsy its a result of it. Im due to have brain scan and arm mri...scared...confused...and why me?are the things am feeling.
So sorry to hear that Sandra
@@TonyFlorida I feel I was in a place of shock when I wrote that comment-an angry one too -but Im getting over the shock and ready to tackle this! Thank you for your kind words&videos!
I got Parsonages Turner Syndrome from my Pfizer booster vaccine.
I heard similar stories to this. Very sorry to hear that
@adamoconnor6232 where exactly were you injected with the vaccine for it to cause you to develop PTS?
Did u recover from it, if so how. Please let us know
I did not fully recover from PTS. I know this isn't probably what you want to hear (especially if you have PTS yourself), but the single thing that gave me the most relief was to avoid the activities that aggravated my symptoms. I also found that my symptoms got worse when I was stressed, so by reducing my stress though things like yoga helped.
I'm currently diagnosed with PTS since Sept. has anyone out there filed for disability?
Even tho I'm past the acute phase I worked in a restaurant and can't do anything like before PTS. Plz let me know
Awe... I got to work tomorrow, in restuarant, plan on just bagging to go orders but if I cant sling my arm I think I'm going to have to tape my arm. Resting arm my scapula sticks out and hurts. Tape me up like a chicken wing and see how it goes.
I would say you have, Hereditary neuralgic amyotrophy.l have had this for 18years.l was pregnant my first episode affected both arms,l have had it 5times,my 2nd last happened 4years ago my scapula stuck out and arm dropped.lt never recovered and l had another episode last sept but still have pain.l had 2 nerve tests both positive.
My son also had an episode 1year ago.
Doctors are so lack in knowledge.l told my doctor what l had.There needs to be quicker diagnosis.
I am reading up constantly,trying to collect all the info l know about this.l went to a chiropractor too for my scapula that was sticking out.A quarter of people who have a brachial neuritis ends up as the Hereditary form (HNA)
I also have Erythomyalila,and small fiber neuropathy which l was diagnosed with 2years ago,but have had it a lot longer.
Definitely a possibility for me. How have you managed to deal with living with HNA?
Mine too is HNA. I've had it since I was 9 and a now 42 and left with both winged scapula and a muscle atrophy on both arms. I have a long list of problems from having reoccurring episodes as every time I have an attack, more is taken away. Very painful disease. I too had an attack during the birth of my daughter. It might have been one of my worst attacks. I'm sorry you went through that as I know what that is like being a mom for the first time and having to deal with the pain. My baby was worth it though lol. I did not know it was hereditary until after the birth. I do pray she will never have this. She is 13 now and healthy, no signs of it and I believe and hope she will not get this. Sorry your son had an attack. Hopefully it was a quick one, poor guy.
@@Antoninaization dont do that dont you know doctors hate it when you do research
wow. you need to watch Dr. Sarno 20 20 interview with John Stossel. Saved my life from being in a wheel chair!!!
Gonna check this out. Thanks!
@@TonyFlorida Thanks for your quick reply on scanner! Really, Tony, watch that Dr. Sarno vid. The ER doc told me I'd never exercise again in 2005! Here we are in 2022 and I'm on my way to play racquetball!! Dr Sarno is a Genius. All I did was read his book!
I just got done watching it. Mind blown. I have actually noticed a correlation between my stress and my pain. Think that's why when I quit my job my pain subsided significantly. Thank you for the recommendation! I just downloaded his audiobook "Healing Back Pain". Is that the one?
@@TonyFlorida Yes!! And do exactly what he tells you! I remember back in 2005, I had a stairmaster upstairs and normally I did 20 min, 100 Floors. One of the things he said you must do is go about doing whatever you formerly did. OH, IT hurt!!! But, day by day I added onto it a minute at a time....then one day, miracle, nothing hurt. If you read some of the reviews on amazon about the book, you will see many success stories. Bottom Line: if you don't have a broken bone or tumor, chances are it is stress related. And like the atty. said at the end, 'yes, sometimes it flairs up, but I now know it will go away...and it does." So true! I have had a few 'episodes' since 2005....but it always goes away. Funny thing, If i watch that vid a few times--it's like my medicine!! :D Keep me posted!
Must find a pure white long haired cat 🐈 to name princess. Lost mine when I was in the hospital 🏥 for neck problems.
Oh no!
Why quit your job? It’s not like there’s one that will be easier in your body
It actually really really helped me to take a break from my desk job and the driving everyday which aggravated my symptoms.
Tony Florida : I’ve had chondrites for years! Broken sternum,3 broken ribs from 1986 car wreck. 1 year ago L4/L5 fused 4 screws,2 Rods. C6/C7 gone no screws. 2 weeks ago so,e up with side of left pec muscle, armpit muscle and trap muscle killing me! Then started the hand and forearm tingling. I was told by doctor friend about TOS and Parsonage Syndrome. I’m going Thursday to an orthopedic and hope to get a steroid shot and toradol shot. Have you had shots and do they help? I can’t sleep so uncomfortable! Went through those operations and now this, I’m really at my end.
@@theirritatedirishman5440 I haven't had any shots. Hang in there. I wish you the best
Tony Florida : Amen Brother, Right back at you.
Do you have a winged scapula?
Not diagnosed, but I would consider my scapula's winged... probably from competitively swimming for many years.
The orthopedic surgeon can't do anything besides surgery. Your shoulders are hunching while the story forms a circle. As a fund scientist, do you honestly believe healthcare is efficient? Please contact me Asap . Darien
Overall, healthcare is efficient.
Just Neurology isnt equipped with many effective therapeutical means.
Nice
@@marcelfr90 tell that to my doctors.. they just give me meds and tell me to go home