Discussions By Condition: Shoulder conditions

Anyone ever heard of Brachial Neuritis?

Posted In: Shoulder conditions 26 Replies
  • Posted By: Anonymous
  • June 29, 2007
  • 06:21 PM

Hello,

I have been going on 2.5 yrs of right trap pain. I've done weekly visits during this time at acupuncturists, physio, chiro, IMS, ART, etc. Some have helped, and I've improved. 6 wks ago, however i did simple strengthening exercise and caused my right arm to lock up. Can't lift it above my shoulder, my muscle is wasting away, and scapula is winging out. My physio thinks it might be a rare Brachial Neuritis aka Paersonage-Turner syndrome. Has anyone experienced this? I'm going to go see a neurologist.

Thanks,
Ben

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26 Replies:

  • I was diagnosed with this myself about 3 years ago. It started as an incredible pain deep in my left shoulder. The pain lasted 2-3 weeks, and eventually I had a "pins & needles" sensation and numbness at the back of my elbow and a few inches above & below. I was abroad at the time, and it was originally put down to tendonitis.I can't iterate enough how intense the pain was. It left me constantly tired and irritable.There was very little strength left in my arm. I couldn't hold a drink or push a door open.After 2-3 months, I could a glimpse of my scapula area in a mirror, and was shocked to see the amount of muscle wasteage that had occurred.Long story short...strength has recovered to about 90%, and I don't notice any discomfort on a daily basis. Slight wasteage is still noticeable around the scapula. One of those things I guess - and there's not much you can do about it apart from physio.
    Anonymous 42789 Replies
    • November 12, 2007
    • 01:34 PM
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  • I was diagnosed with PTS when I was 16 which was back in 02. I noticed something was wrong when I was in my car and I couldn't lift my left arm to changed the radio station. I had no strength to even lift my arm at all. I had almost a complete atrophy of my muscles in my shoulder. My shoulder blade started to wing pretty bad. I had some pain but I was young and didn't feel much. Only when i tried to use it. If i just left it alone everything felt fine. That continued for about a month or so. I saw a doctor immediately. The first thing they asked is if I was doing drugs hahah I just laughed. Then they thought a rotater-cuff injury. Then they didn't know at all. I saw about 10 different doctors until I saw a neruoligist and i had many MRI's and x-rays and a nerve conduction test and soon after that the doctor was able to dianosis me with PTS. There is no treatment at all. I just slowly started to use it more and more and eventually my muscle mass and strength started to come back. It was a pain in the **s. I wasn't able to play football anymore but today I am fully recovered and I am lifting weights on a regular basis and can bench press over 300 lbs and there is no discomfort and no winging or anything. Full recovery.
    Anonymous 42789 Replies
    • February 28, 2008
    • 08:27 PM
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  • I got dignosed with Bursitis in my back right shoulder but they said it didn't explain the pain going down into my wrist. When it started it was a tingling feeling in my back for a couple months, then it went into my arm until it was numb. After many PT sessions and shots it started to get better but at least once a month it starts back up and if I do not take steriods and anti flam meds it will onset hard. This sounds like what you are talking about but I am not sure. My doctors just said we do not know why it does that and left it like that.
    Anonymous 42789 Replies Flag this Response
  • hey,i was diagnosed with brachial neuritis back in january this year. it actually started for me september 2007. i woke up one morning and initially it felt like id slept awkwardly on my shoulder but as the day progressed i started getting this wave of deep pain from my scapula out to the top of my left bicep. i was in agony for about a week, couldn't sleep or lift a jug of water with my arm, it just hung there and hurt constantly. i decided to see a doctor who asked me what i did, what id been doing, etc. i told him i worked out quite a bit, and he diagnosed me with tendonitis. he put me on a course of NSAIDs and sent me to physio. even with NSAIDs the pain didnt stop for about 3 weeks, and it seemed to just disappear at once. it was the strangest thing. even though the pain had diminished the weakness hadn't.i continued with physio and eventually started to get movement back into the arm. the physio thought i had tendonitis of the infraspinatus and the supraspinatus muscles. once the pain had gone for good and i had started to move the arm freely without the pain, the phsyio told me to go back to the gym if i wanted and to go light at first. in about december i started working out again, the physio told me to take a break over christmas and to come back in january for a follow up. once i started to work out i realised how weak i'd become. i used to bench about 180, now i could barely even lift the barbell. no strength in external rotation with even 5lbs of weight. no strength in the supraspinatus, maybe 5lb for 5 reps before it became too fatiguing. when i got back i decided to have a look if i could see anything and that's when i first noticed the atrophy. i thought it was simply that i hadn't used the muscle and it had gotten smaller, i had no thought in my head about nerves. so over christmas time and early jan i started to work out again, i couldn't do my chest at all, i was using elastic and household products like shoes to do external rotation, my back somehow escaped the atrophy so i could still row, although i could not pull myself up like i used to, it was too uncomfortable.i rebooked an appointment with the physio in january and when he looked at my back again the atrophy must have come more apparent. he said it was like someone had taken an ice cream scoop at my shoulder blade. pretty disturbing. he sent me to the doctor again and the doc sent me to a neurosurgeon. i had an EMG and the doctor confirmed it was brachial neuritis. i'd had no idea about this before hand and i was really nervous about going to the hospital... supposedly i have started re-innervation in my affected muscles but it is now march and i am still feeling very little strength. i can now move my arm freely although it is uncomfortable when hyperextended in some positions. as far as working out, my bench press sits at 95lbs and this is very difficult after a while, very fatiguing. i'm persisting with it because i've read that it will heal itself, eventualy. i have started to feel fasciculations in the affectred muscles but the atrophy is still very obvious. the physio told me that the twitching i feel is a good thing as it shows the nerve is functioning again - i'd like to know if someone can confirm this is true? people at my gym had never seen anything like it before, so i know it is a very rare condition. i guess my philosophy is just to deal with it. hope that you're one of the 90% who do get pretty much a full recovery. i am hoping that right now, i know i am getting a bit stronger but the progress is frustratingly slow. there's not too much out there on the net of people talking about their recovery, how long it took, what exercises they did to help, whether it recurs, etc. which would be really helpful. i still have substantial weakness in the external rotator muscles and the triceps and bicep. it's been 6 months now.one thing i can say about the etiology, since it seems to be unknown, is that before i got the condition i was working long hours, had a pretty unsupportive girlfriend who stressed me out a lot at home, i'd recently had a really ugly cough and cold and i worked out a lot, almost everyday. i'm 22 years old. this seems to be a common pattern among accounts that i've read where people had the condition. there was some illness, vaccination, or other trauma that preceded its occurrence. its just so frustrating that it takes so long to heal!anyway i want to wish you luck in your recovery. i would never wish this on anybody because, as a person who enjoys being active and testing himself at the gym every day, this is one of the worst things that can happen. a lesson to people who work out a lot i suppose is that you need to rest as much as possible.your body is more fragile than you think. if you don't feel well then don't work out. thanks,matt
    Anonymous 42789 Replies Flag this Response
  • I've just been diagnosed with Brachial Neuritis. Amazingly, this occurred when I was in the hospital, minutes from receiving surgery to fix a rotator cuff tear. The surgeon came to check me out before I went to sleep and pretty much said... 'hang on, you don't need an operation, it's your nerves'. Obviously that is quite bad, the one consolation was supposedly that I don't have to have surgery, but honestly, that seems preferable because it's a clear fix for a clear problem.Anyway, doom and gloom aside, it seems my symptoms and history are text-book. (Sudden onset - almost overnight, no injury, excruciating pain, weakness). My story is that I was laid up with a really bad flu-like fever -- but only the sort of thing that comes and goes within a few days. I thought the stiffness in my shoulder was just part of the fluey aches and pains. Next thing I know, my right arm just doesn't work properly. It's all okay from the elbow down, but lifting my arm up in front of me, from the shoulder, is impossible. It's too painful but I also have the sensation that it just won't do it.That was two days before Christmas. Owing to the waiting list for NHS surgery, it's now May and I've got the muscle wastage that the other writers describe above. However, I've started doing the Physio excercises they recommeneded for post-op shoulder surgery and within a few days the difference is really noticeable. Only small improvements -- but definite ones. Hopefully it'll go right over time. My big fear, like the other guy, is that I'll be in the 10% that don't recover. THat's really scary. It's definitely given me a boost reading the stories on this forum though -- glad to hear that you guys are improving. I'm definitely interested to hear from other people who have been diagnosed with this. It seems we're really rather rare!Matt (33) England.
    Anonymous 42789 Replies Flag this Response
  • If you ever had a case of whiplash , shoulder injury or a repetitive type of injury you might read about thoracic outlet syndrome {TOS}
    Anonymous 42789 Replies Flag this Response
  • HI, well this must be really rare, i had a crash 2nd of Jan 2008(only a wee one) no injuries pain or anything. Then on feb 12th woke up ok but half hour later right arm/shoulder was iun severe pain thought i'd slept wrong!! Went to work as norm with few pain killers. Then doctors 3 days later diagnosed frozen shoulder told me to take mild pain killers, was back in doc's 2 days later looking real pain killers! was still sticking to trapped nerve. 2 wks went by then work sent me to physio this went on for 5months pain subsided alot but arm/shoulder gets very tired no grip or strength can't use above shoulder or push things away from me. So i put my foot down and said this is more than meets the eye. So doc sent me to private doc(work paid) 8.09.08 diagnosed it straight away PTS-Brachial Neuritis sent me for MRI and i'm seeing him again tmrw. I get pain in right side of neck like someone sticking their finger into my head. plus i've had a couple of eye infections that i've never had think they're associated with this. Good luck and speedy recovery to anyone whose unlucky enough to get this dam thing. plus has anyone else had any other symptons besides the obvious.Tony
    Anonymous 42789 Replies
    • September 15, 2008
    • 05:27 PM
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  • HiI started with a dull ache in my left shoulder while playing golf, this spread over both shoulders down both arms and built in intensity. The drive home was horrific don't know how i made it but when i got home it just got worse anyway to cut a very long story short eneded of in an ambulance (twice!) got diagnosed with bursitis of the shoulder which i knew was wrong and eventually ended up admitted to hospital for a week! The pain was beyond anything i'd ever endured for about 2 weeks then it just went and my shoulder muscles just slowly disappeared and my arms stopped working. Still had no diagnosis had a huge cocktail of painkillers that has now knackered my liver. I got sent to orthopaedics had mri scan had nerve conduction studies etc still no diagnosis, i kept telling them that it felt neurological not skeletal, but i was toild to go away it will probably get better! Finally saw a doc about my liver and he said you need to see a neurologist! Saw the neuro guy who in about 45 seconds said you have Brachial Neuritis, thank god it has a name i had alsorts of stuff going on in my head! It started on May 28th and i got my diagnosis on 13th September!! Worrying thing is it doesn't seem they can do much and it can take years to get better! I also appear to be one of the 20% that get this bi-laterally and it affects the nerve supply to my diagphram so breathing is well just weird really! I had an infected subacious cyst removed 4 weeks prior and this is the likely trigger apparently.Does anyone have a link to any excercise programs or anything similar as i want to try and give recovery the best chance. At least the pain has gone and i know what it is so i dont think i have some terminal disease lol but should it really take 4 months to diagnose? i know its rare something like 1 or 2 per 100,000 but surley 4 months!!!?Good to hear so many recovery stories keep them coming we sufferers need the positive vibe lol
    Anonymous 42789 Replies
    • September 19, 2008
    • 08:44 AM
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  • Hey, I know how all of you feel...I was drafted by the balitmore orioles in June of 2006, was in a tournament to end the summer and tore my lateral meniscus in my knee. I accepted a full scholarship to the University of ALabama where I began to rehab and out of nowhere contracted horrible pains in the shoulders, the winging, weakness (couldn't pick up the milk with my right, couldn't do anything with the left). For 6 months doctors thought i had some form of ALS or cancer, because they had never seen muscle wasting at such a rapid rate. Spinal taps, bloodwork...no results...finally, mri's and visits to the most well-known neurologist in the country diagnosed me with bilateral (both sides) brachial neuritis... Some doctors said i would never play ball again, and I laughed, some i screamed at, but I knew i would come back... It is now September of 2008, and I am battling for the STARTING catcher's position for one of the top 5 baseball teams in the country, the University of Alabama. It took about a year after the onset of pain before I really noticed I could do some stuff. I started with swinging a bat, then it became weightlifiting, then last year I started throwing.. Doctors call me a freak cuz they cant figure out how I am throwin and throwin at a consistent Division one level with barely any muscle in my throwing arm shoulder. I guess my supra/infra-spinatus combined with my peck and rotator cuff strength compensates. The last thing that is coming along is my deltoid muscle tone in my right deltoid, where the first onset of pain began. In the last two months, what started as random twitches is now a small muscle in my shoulder that i can flex and control. I can lift just as well as anyone on the team, and because I have been through ***l and back, you best believe I am a leader on this team. This is definitly the weirdest and most frustrating disorder, but it just takes time. for any doubters, TRUST ME, i was almost convinced I would never be able to move my arms from the elbow up again.. I went from 225 lbs. down to 193 lbs. in 8 months, and now im back to 220 lbs. exactly two years after the beginning. I was lucky enough to not lose any eligibility so I have two more years. If I have a good year, I should get the opportunity to play professional ball again. And if...no, when i make it...EVERYONE will know what this disorder is, what it does, and how incredibly frustrating it is.JUST HANG IN THEIR TRUST IN GOD AND TRUST YOURSELF!!! NEVER GIVE UPand this spring make sure you check us out on tv, if you see a really italian name on the catcher from alabama, thats me, I am from NJ/NYC I just play ball in the south!!!
    Anonymous 42789 Replies
    • September 19, 2008
    • 01:50 PM
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  • About 6 years ago I got hit by a ground stroke (lightening) when I was working as an Outward Bound instructor. Nothing hurt, just some scrapes and a headache, so I figured i'd be fine. Two weeks later I was mopping and I thought my left shoulder exploded. The pain then just wrapped right around my left ribs and all the way down my left arm where pins and needles joined the party. I was a college wrestler and have had all sorts of injuries, torn ligaments, dislocated shoulder, broken collarbone, broken ribs and this feeling was worse, not as bad, worse. For the next 6 months I was in various degrees of pain. I had to stop working becasue I could no longer carry a pack, but also becasue I just couldn't hold it together some days. I would just be so tired and grumpy. I ended up not really able to do anything at all, even sleep. I saw emergency room doctors (they checked to see if I had a heart attack, I was 24 and in great shape), orthopedists (they saw the winging, and the atrophy, but couldn't find the cause), general practicioners (I was diagnosed with something called costial contritis (sp?), but they mostly just passed me on). They gave me lots of different pain medications and such, none of which made a compelling difference. I never saw a neurologist, never thought to see a neurologist, never even considered seeing a nuerologist. During the whole process, the pain was the worst, but just below it was a feeling that the doctors thought I was messing with them. I just never thought they believed me. part of their hesitation could be that I kept trying to exercise through it all, I found that when I was active I could fight through it better than when I was immobile.After about 6 months the pain just started to subside and become less frequent. I still never knew what had happened, just that it wasn't there anymore. I started coaching wrestling and was able to find another job and return to work. The thing is I would still occasionally get the shoulder pain with no warning, it just wouldn't stick around as long as the first time. Over the past years, I've described it as a kind of mystery since I had no idea what had happened and the medical professionals seemed to think the fact that it had gone away was the only significant part of it all.A month ago I saw an orthopedist about a different injury and, on a whim, told her about my shoulder. You see, the shoulder has become a huge issue again, I hurt just like I did the first time. She did some tests and passed me on to a nuerologist and he diagnosed me with brachial nueritis. I am currently on a steriod regiment that is not doing much and some pain killers that are also not doing much. Both of which are hugely disappointing. On the other hand, for the first time since I first thought my shoulder exploded, I feel like I'm having responsive medical care and its also nice to read other people's experiences. I don't know, I just want to stop hurting. I wsh there was a clear problem so there could be a clear solution. This constant pain thing just isn't working for me. Good luck to everyone else who's experienced this song and dance. I hope you make it out quicker than I have, 6 plus years is too long.
    hondo34 1 Replies
    • October 6, 2008
    • 08:16 PM
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  • Just over a year ago I started feeling a tightness across my right rib area then after a few days it got worse and i noticed my right ab had moved upwards. I went to my GP and his first thought was shingles but no rash appeared and I exibited no other symptoms. He then sent me to physio thinking i had just torn a muscle. Pyshio didnt help so I was sent see a "Specialist Surgeon". He sent me for CT, MRI, X-Rays the lot and the result was nothing. Gave me Trepiline for the pain and told me to come back in 3-6 months depending upon pain. Went back but still nothing. Tightness remained - the feeling is more like the whole side and back muscles are being pulled up and back, if that makes any sense? Trust me its sore.I decided to see a "Sports Psychician" as I used to work out 4-5 days a week and thought maybe i had damaged myself working out. He gave me a Cortisone and some other Steroid(name escapes me at the moment) injection into the muscles between my ribs. This hurt like ***l but gave me some relief as the muscles seemed to relax and move back in place. I got this 3 times and he then started me with physio. I started experiencing more pain whenever I done back or shoulder exercises so I stopped them. Sitting afterwards I was rotating my right shoulder and felt it clicking as I was moving the blade up. Then...WOW...the worst pain I have felt in my life! It felt as if I had pulled on a nerve and that nerve wanted to snap. I almost blacked out and wish I did. I had extreme pain in the shoulder region as well as my back and side. Next day back to the doc who then sent me to see a neurologist. Neuroligist done some tests using electrical pulses and within 5 minutes gives me the diagnosis as Brachial Neuritis. Booked me into hospital straight away and started me on a 5day course of Cortisone administered via drip topped upevery 4hrs with 120mg Cortisone pills and pain killers. This helped with the pain but made me feel terrible. It is now 2weeks later and I am taking Lyrica(150mg) and Trepeline(25mg) and some other pain pill. But i must say I'm not sure I agree with him, especially after reading previous posts. I can move my right arm. Pain subsides when I lie down on my left side and relieve the pressure on my right shoulder. To me it feels like I have a trapped nerver under my right shoulde blade, but, doctor tells me this is due to "wrong signals being recieved by my brain". I will see another neuroligist on 20/08/2008 for a 2nd opinion. Glad to hear there is light at the end of this terrible tunnel though. Good Luck to all
    Anonymous 42789 Replies
    • October 16, 2008
    • 00:01 PM
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  • Today is 3/29/2009 - two days ago I was diagnosed with Brachial Neuritis (Parsonage Turner Syndrome). Believe it or not I am relieved to know there is a name for what I have because I was sure that there was something wrong. I am 51 and have been very active my whole life (since 17). I also happen to be very meticulous in recording my lifting and other conditioning. Like so many others have described here my symptoms were classic except for the fact that I started noticing a decrease in my bench press 3 weeks before the severe pain stage. I wrote in my training journal starting January 8 that my left arm was weak. I continued to record left arm weakness the following 2 weeks, but at this time my strength had only gone down a little. On the weekend of February 1st I experienced the classic pain symptoms. The pain felt like someone was prying my left scapula up from the bottom portion. The pain was so unbearable I could hardly stand it. My first course of action was to see my chiropractor as I thought maybe I had pinched a nerve. On 2/6/09 I saw a doctor who gave me Endocet and a Trigger point injection with a steroid. I next had a conference call with my regular doctor on 2/12/09 who wrote down upper back pain left side “back strain”. On 2/13/09 I had another telephone conference with my Dr., who then prescribed Cyclobensaprine, Etodolac and more Oxycodone. On 2/16/09 I emailed my Dr. the following. Dr. I have had pain for about 3 weeks now in my upper back - left side. I am still taking the prescribed medicine, but I am wondering why I am still having this pain and why it started in the first place. Last week when I talked to you (Friday) I had the pain consistently in my left scapula area next to the spine. This is why I went to see a doctor the Friday before. Today the pain seems to be more in my shoulder and not in my back. My left hand/arm is still numb (3 weeks now).On 2/23/09 my Dr saw me again who ordered a complete blood workup as well as a cervical MRI. On 3/13/09 my Dr reported that my lab work all looked normal and my MRI showed mild arthritis of the neck, but no disc bulging or herniation to explain my symptoms.On 3/5/09 I emailed my Dr the following message.Although my pain on my left side in my upper back and shoulder and upper arm have stopped I still have numbness and my strength on my left side has dropped significantly when extending my arm. I am convinced that there is something wrong that needs to be determined. There is nothing I can think of that would cause my bench press to drop in two months by almost 100 pounds. Could a MRI of my shoulder area possibly reveal an impingement? If so I would like to schedule another MRI immediately. I would also like to be checked for nerve conduction or something to that effect. Could having my blood tested reveal something? Something is not right. I hope that you recognize that I know my body and that you can help me to determine what the cause is before things get worse. Please call me: On 3/11/09 I went for another Dr. visit. This time to convince my Dr. that I knew my body I took in my last three years of training journals and a spreadsheet of my blood work. This convinced him that I knew something was wrong and he referred me to a neurologist.On 3/27/09 two days ago a neurologist diagnosed me with Brachial Neuritis (Parsonage Turner Syndrome). Although it was depressing for me to see my strength continue to decrease even before the onset of the pain stage. The fact is I only stopped training less than two weeks. My whole life I have trained and I was convinced that I could overcome whatever this was, with time and consistent training. I am not sure how long it will take, but I now know that most people recover (which is very reassuring) and that I will too.
    Anonymous 42789 Replies Flag this Response
  • Hi,These emails are enlightening to me. I am a 39 year old mother of 3. I have had three caeseran sections and after three days after having my third child in December 08 I experienced extreme pain in my left shoulder and arm. It last for two days and I was prescribed pain killers. Three weeks later, I developed a winged scapula which is pretty severe and muscle wasting. My mobility in my right arm was horrendous and I could not even carry the baby for two months also my whole diaghram seems completely out of shape so I think I have it pretty bad. I went to a orthopaedic surgeon, who said it was bad posture from feeding and having three children within three years. He sent me to a neurologist to have nerve conduction studies. He was brilliant and diagnosed me with post operative neuritis aka a family of parsonage turners syndrome. It is now 5 months later and I have had lots of physio but only slight improvement, but am extremely hopefull I will make a good recovery. I also have pain radiating into my neck and head and my eyes have cloudy vision, does anybody experience any of these symptoms with it too ??
    Anonymous 42789 Replies Flag this Response
  • Good afternoon everyone,I do not want to scare anyone on here but, rather would like to enlighten people to the fact that 2nd-3rd opinons in relation to this syndrom are a good idea. I was doing a search this afternoon on this rare sydrome as my father was wrongly diagnosed with it. It is in fact a rare sysdrome and unfortunatly the doctor who had diagnosed this on my father was wrong (infact turned out to be a spidle-cell sarcoma Cancer).A quick time line- My father worked out religiously with a trainer and one day he thought he had over worked his shoulder.... 2 weeks went by and pain got worse. He had a previous injury from 12+ years ago (motorcycle accident with a plate and screws). First step was to clean up some bone spurs and take out the old plate as there was no more use for it. Pain had not subsided and muscle/tissue loss began to happen. This Parsonage-Turner sydrome was the final decision after seeing a nerologist and no further look into the pain was done. They had the wait and see mentality as there is no reason/cure for Turner Syndrome. Almost 1.5 years as the pain increased and he was unable to sleep well due to the pain that was in his shoulder and back he had collapsed outside our home. He was taken to the hospital and a new Dr. found he had fractured is Leg. They inserted a rod in his leg and finished surgery. His next check up reveled that the leg was not healing correctly. This is finally when a new look/idea was put into place. They had spotted the sarcoma in the leg and the shoulder where it originally started. By this time due to the "wait and see" mentality the cancer had over 1.5 years to progress without treatment and ultimatly took his life.Moral of the story is to make sure more then one doctor is consulted with this rare sydrome as it seemed to be a end all diganosis where if looked at in a different angle they would have spotted the Cancer early and possibly my father would still be with us today.I hope this helps in any case that can find an early sign of Cancer instead of being wrongly diagnosed.
    eric19az 1 Replies Flag this Response
  • If you are on Facebook join the Parsonage-Turner Syndrome Support Group, it's currently the one with 13 members. The other one is outside the U.S.
    Anonymous 42789 Replies Flag this Response
  • Hi,Brachial Neuritis, first known as Parsonage Turner Syndrome is, as most all of us know that have it, actually an auto-immune disorder. Regular "pain killers" to relieve the acute pain which goes along with this increadibly painful disorder, are not effective and for a very good reason which I learned from my neurologist (and none too soon because the pain was the worst I'd ever experienced!). Surprisingly (at least to me) was that the drugs which really worked were ones which BLOCKED the pain is one of the ones used for epilepsy - they were neurological nerve blockers! (And they successfully block the pain "signal" so-to-speak.) Sadly, I'm one of the minority of individuals who continues with Brachial Neuritis. Unlike many others who have seen improvement and have regained strength, the use of their arm, shoulder etc. I have not. I must continue to use medication and exercise my (left) hand, arm and shoulder each day at home. The pain-blocking drug I (ended up) taking for the first 8 years was Topamax, three times a day. It isn't anywhere near as strong a dose as an epileptic would have to take but the point of using this drug is that it is a NERVE PAIN BLOCK which is what Brachial Neuritis is - a nerve pain and, as all of us know, it's wickedly horrid! I, like anyone else trying these medications, had to try a couple of the meds before I found the right one for me (Topamax) - some had side effects which weren't good for me! Now, after 8 fairly expensive years of prescriptions, even with insurance, the Topamax is finally available in generic. I've gone from $75 per month for the prescription to less than $10.00 per month! What a nice change! I take several other meds too. About 4-5 times each year my left shoulder will flair up, particularly when the weather gets cold. I know, within an hour or two, when it begins. I call my neurologist's office and request a Medrol pack - decreasing daily dose of steriods. That will stop the inflamation quickly.Initially, when I was diagnosed, I had to take large doses of prednisone for several. I also had to stay at home because my immune system was compromised due to the steriods and I could easily become very sick if exposed to anyone who had a cold, the flu, etc. I still have to stay at home when I take a Med pack, just to be safe.The vast majority of people who have Brachial Neuritis recover over a period of a few months or a year. Unfortunately, there are a very few of us who do not. But, with some of the medications, constantly working to keep the strength up as best we can in our hand, arm and shoulder, we can at least keep from losing all use in the side affected by the disorder.The most important thing is finding a neurologist who is familiar with the disease, is willing to work closely with you and listens to you. I was blessed because it was actually my orthopedic surgeon who recognized what was wrong (pretty unusual!). When I awoke in the middle of the night with this incredibly horrible pain, from my neck to my shoulder, and went straight to see him that morning, he told me it was one of two things...a damaged vertebrae or Parsonage Turner Syndrome, neither of which was good at all! He sent me that morning to the best neurosurgeon in St. Louis (MO). The rest is history, but as I've said, unfortunately I've been one of the ones who continues to live with it and sadly always will. I AM fortunate though that there are medications which allow me to be able to function and live a fairly normal life.
    ShelleyS1 2 Replies
    • October 18, 2009
    • 05:39 PM
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  • When I was 36, I was doing a heavy stint of playing video games one simple night and went to sleep. Then I woke up in excruciating pain in my right arm. It felt like someone broke it backwards. It subsided in 20 minutes and I thought "Well, I probably slept on it wrong or maybe it was some weird carpal tunnel thingy since I get tingling in my wrists all the time from all the computer time at work and at home." Two days later, I am working late, trying to finish something and all of the sudden I cannot make fine movements with the mouse. Worse, I cannot hold up my right arm perpendicular to the desk. I'm like this is so weird! Then burning pain under the right arm pit and especially around the right deltoid muscle. Very long story later, after two years, I have seen a dozen doctors, but they definitely ruled surgery out and wanted me to physical therapy which of course my corrupt insurance company didn't cover more than a dozen visits because they claim it had no effect on my condition even though every doctor and website says that is the *only* way to achieve improvement. So bottom line there really hasn't been much improvement at all. I have to use a chair high enough so that the arm rest is completely parallel to the desk top or I cannot use a computer and I still have trouble driving or holding a glass in my right arm, and of course pushing open doors, etc.I am no contemplating either seriously trying accupuncture or paying a few thousand dollars out of pocket (which is a heavy burden) for p/t but I'm not sure it will be worth it.
    Anonymous 42789 Replies
    • October 24, 2009
    • 03:53 PM
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  • When I was 36, I was doing a heavy stint of playing video games one simple night and went to sleep. Then I woke up in excruciating pain in my right arm. It felt like someone broke it backwards. It subsided in 20 minutes and I thought "Well, I probably slept on it wrong or maybe it was some weird carpal tunnel thingy since I get tingling in my wrists all the time from all the computer time at work and at home." Two days later, I am working late, trying to finish something and all of the sudden I cannot make fine movements with the mouse. Worse, I cannot hold up my right arm perpendicular to the desk. I'm like this is so weird! Then burning pain under the right arm pit and especially around the right deltoid muscle. Very long story later, after two years, I have seen a dozen doctors, but they definitely ruled surgery out and wanted me to physical therapy which of course my corrupt insurance company didn't cover more than a dozen visits because they claim it had no effect on my condition even though every doctor and website says that is the *only* way to achieve improvement. So bottom line there really hasn't been much improvement at all. I have to use a chair high enough so that the arm rest is completely parallel to the desk top or I cannot use a computer and I still have trouble driving or holding a glass in my right arm, and of course pushing open doors, etc. I am no contemplating either seriously trying accupuncture or paying a few thousand dollars out of pocket (which is a heavy burden) for p/t but I'm not sure it will be worth it. Have you seen a neurologist? That's who will determine if it's Brachial Neuritis or something else. So often this disease is misdiagnosed or not diagnosed at all. If it is Brachial Neuritis the neurologist will be able to get you on the correct p/t, which your insurance will then cover and may be able to tell you how long it will take to regain strength in your shoulder and arm. This disease doesn't have exact predetermined guidelines. It isn't the same in each person and that makes it difficult for each one of us who is or has been affected by it. Since it is an uncommon disease (isn't seen in many people), there's neither a great deal known about it nor a lot of doctors familiar with it. But more and more neurologists are and most all of the top neurologists are! So my advice is to get yourself to a good, preferably top neurologist. They will be able to tell you if you do indeed have or had Brachial Neuritis and will be able to get you started on therapy which your insurance should then cover. Hope this helps!
    ShelleyS1 2 Replies
    • October 25, 2009
    • 00:01 PM
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  • I’m a professional golfer who was first diagnosed with PTS August 2004, after receiving a tetanus shot a few months prior. I was woken up at 4:00am with excruciating pain in my left arm that was so severe, it brought me to my knees. I took it upon myself to drive to the hospital, barely making it there, slumped down in my seat. The doctors in the ER were baffled by my symptoms. I was given morphine and it had no effect. I was admitted overnight for further evaluation. They sent another doctor who also had no answers for me. They gave me an MRI and I was loaded with pain killers, all of which did not help me. The MRI showed nothing. They even gave me an EKG since the pain was all down my left arm in case I was suffering a heart attack. The pain radiated to my shoulder and turned into sharp throbbing pain. I was released the following day with no diagnosis and a prescription for pain medication. I was referred to another doctor and still, no answers for me. As you all know, the frustration was building. I felt helpless because no one could help me and I was still in constant pain. The pain was so intense, I was only able to sleep for about an hour a night for three weeks. Finally, a few days later, I was sent to a Rehabilitation Medicine and Electrodiagnosis MD who gave me an electromyography (EMG) and nerve conduction velocity test (NCV). These tests are used to help evaluate and treat problems related to your muscles or nerves. An EMG measures the electrical activity of the muscles and can pick up any abnormal electrical signals to locate the specific site of nerve damage, if any. The NCV test evaluates nerves by measuring how fast the electrical impulse travels through them. Certain nerve diseases cause the electrical signals to travel more slowly. There is some discomfort with these tests, but I highly recommend them if you suspect PTS. This is how I was diagnosed with Parsonage-Turner Syndrome. Even after the proper diagnosis, the doctor tried several medications for pain with no success. Finally, I was prescribed Neurontin (gabapentin) and finally the pain subsided a lot. I was able to keep the pain under control. Neurontin is a medication for nerve pain. This is what worked best for me. The other prescriptions I tried did not work because they were for muscle pain. I had to take it for a month before the pain was gone. Generally PTS takes about 3 weeks to one month for the pain to stop and during the time you are experiencing pain, you are also experiencing muscular atrophy in the affected muscle. For me, it was my infra/supra-spinatus muscles that wasted away, leaving an indentation in the back of my shoulder and winging of the scapula.Although the pain subsided, I was restricted in arm movement. I could not lift my arm to reach or grab anything, even to brush my teeth! I couldn’t reach my steering wheel. I was able to still move my fingers, I just couldn’t lift my arm even table length when I was sitting down. By then, I felt like my arm was useless. This lasted for about a month and a half before I was referred to a physical therapist. I was given a range-of-motion evaluation with a result of minus zero (meaning less than the 0-5 bracket). I was basically a monoplegic. That’s when it really hit me. I feared I would never be able to return to golf or even return to normal every day life. I went through vigorous exercises three times a week for about another month and a half. My routine consisted of using the arm bike, an exercise using a bungee cord for internal/external rotation, in combination with lateral pull-downs and a lot of others. I highly recommend physical therapy but the process takes lots time and patience. You’ll go through a lot of frustration and maybe a little soreness, but I feel it speeds up the recovery time. You must stick with it even when you want to give up. It took me about 4 months before I had regained full range of motion and use of my arm. It took about 2 and half years from diagnosis for muscle regrowth. I realized this was going to be the biggest fight of my life, but because of my faith in myself and God giving me the reassurance, I knew I was going to get through not just the physical, but the mental anguish as well. The ironic thing was, something told me that I was going to make a full recovery, and I did. Shortly after I finished my physical therapy, I finally returned to the golf course to pursue my dream to one day make it on the PGA tour. Upon my return, I immediately won a tournament and brought home a trophy for longest drive, a trophy for closest to the pin, and a trophy for 1st place overall. I still proudly display these in my home today because they represent triumph over PTS and being able to come back stronger. For four years, I followed a heavy workout routine for five days a week. In September 2008, I started having pain in the right side of my trapezius. I went to the doctor the following day and was diagnosed with a sprained trapezius. In the middle of the night, I began having shooting pains down my neck and trapezius area. The pain worsened and kept me from sleeping over the next few days. I was ordered an MRI to see if I had a pinched nerve in the neck area. Results were negative. At that point, I started wondering if this could be PTS again and went back to the doctor who had diagnosed me the first time. After performing the same previous tests, it was confirmed that I had contracted PTS for a second time, this time in my right shoulder. I was devastated. I thought “How could this be happening to me again?”. I suffered the same pain and muscular atrophy but restricted movement was not as severe as it had been in my left arm. I followed the same road to recovery as I did the first bout. I was more secure this time around because I was confident I could beat it.Now, a year later, here I am back on the golf course. Ironically, I am playing better than I ever have in my life. I almost have all my strength back and my muscle is still filling in. I do still have to maintain both my shoulders with some exercises in order to keep me strong. I hope I have been able to give you a better understanding about PTS and inspire you at the same time. Once I fulfill my dream, I will put this on the map through my golf. Although it’s unfortunate, it’s nice to know that we can all relate to each other, offer support and not feel so alienated. My thoughts and prayers are with all of you and I hope that we are able to educate others more about this syndrome so that doctors can diagnose future patients faster and correctly, and eventually maybe even find a cure.
    Anonymous 42789 Replies
    • October 28, 2009
    • 08:17 PM
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  • I have a shoulder atrophy also one in my biceps but my fingers work correctly. I think I have this because I have read the symptoms the other users. I didn't had any injury on my arm and doctors don't have any idea of the causes. Also the doctors don't know exactly what it is but reading this forum I think I will recover my strength and my arm motion. I hope that. The atrophy started when I was 12. I started to lose strength in my right arm and now I am 18 and I can't raise it more than 45º. also my biceps are weakened too. I think it have not progressed too much and I'm happy of that. I have done exercises to stop the degeneration of the muscle and I believe that it has occurred because of the exercises that I thought won't work but at last it was important. I hope it will full recover.
    Anonymous 42789 Replies Flag this Response
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