I Have Parsonage Turner Syndrome

A Parsonage Turner Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Parsonage Turner Syndrome. You're not alone. 183 People

    It is hard to get through

    but hang in there. I too am 51 years old in amazing fit shape as the doctors said everything but this disease I would be at a 37-year-old but this disease is taking a toll me and to top it off I was born with a birth defect which was missing my left arm so it is my right arm...
    Skhm Skhm
    51-55
    Sep 10, 2015

    White Male - 49.Started

    as a sharp burning pain under left scapula while in the gym lifting weights overhead (overhead press). Thought I had pulled my trapezius muscle. Severe pain for 3 weeks in scapula area and radiating to left pectoral, tricep and forearm. Also some pain in left wrist and last...
    Demo65 Demo65
    51-55, M
    5 Responses May 20, 2014

    I was diagnosed with PTS in late 2013

    and really struggled to regain strength in my left arm. I had significant pain for the last six months which the ortho attributed to a torn rotator cuff tendon that I probably got as a result of the related shoulder joint imbalance. But I just had surgery to remove a thymoma...
    Asl18940 Asl18940
    56-60, M
    Feb 16

    Awful, But It Gets Better

    Summary - quick onset, appallingly painful first few weeks, spontaneous improvement but still a way to go. My experience started with what felt like a strain in my right shoulder deltoid, at about 10pm one evening. The pain got worse during the night, and spread to my entire...
    KiwiAl KiwiAl
    41-45, M
    2 Responses Oct 2, 2013

    Hi, my name is Savannah.

    I jsut recently got diagnosed with PTS, I have been dealing with this disorder for over two years.. It started when I was thirteen.. I am now fifteen and I just developed subluxation, I figured if I knew others who are/aren't dealing with the grueling pain of PTS it would make...
    augustcall augustcall
    16-17, F
    3 Responses Oct 12, 2015

    We Will Not Be Defeated!

    This is a terrible condition but by sharing and encouraging  each other we will survive. It all started in 2007 but I was not diagnosed with BN(Brachial Neuritis)/ PTS/ NA (neuralgic amyotrophy) until 2010. I have seen over 15 doctors in the Dallas/Plano Texas area. I have been...
    ItsMe2007 ItsMe2007
    46-50
    2 Responses Nov 12, 2013

    About 17 months ago I injured my left shoulder

    during a period where I was training particularly hard and i just woke up one day and could hardly raise my left arm at all without much discomfort. The physiotherapist said I had 'supraspinatus tendonitis' so I started a rehab programme which was going well for about 2 months...
    dukeyboy83 dukeyboy83
    31-35, M
    2 Responses Jul 7, 2015

    Many Lifetime Instances Of PTS

    I am a 56 year old male. I had my first occurrence of PTS when I was about 7 years old after I had an appendectomy. After that I had at least a half dozen re-occurrences up until the time I was in my early 20's. The affected areas varied quite a bit and affected both...
    rbjnet rbjnet
    56-60
    Oct 1, 2013

    One Year Down And Finally Getting A Little Better

    Fall 2012, went to work and having a normal day. Then about 10:15AM I had a severe pain in my right shoulder. First time in 20 years I left work early. Went to see family doctor. He turfed me to orthropod. X-Ray and MRI of shoulder showed nothing. Orthopod turfed me to...
    frankmitt frankmitt
    66-70, M
    1 Response Sep 19, 2013

    Diagnosed In May...

    I woke up in the middle of the night May 15 with excruciating pain in the middle of my back and shooting down my right arm. I went to the ER where they treated me for pain (it took 4 doses of morphine before the edge was even knocked off) and then, since they had no clue...
    geogal geogal
    26-30, F
    15 Responses Sep 7, 2009

    I started with pain in right shoulder blade on

    April 2, 2015 and diagnosed on May 15, 2015 with PTS. The pain is severe on the right arm, elbow, forearm, hand and fingers throughout day and night, was prescribed oxycodone 10mg, naproxen and notriptyline, nothing works!!
    hankvankat hankvankat
    56-60, M
    3 Responses May 18, 2015

    So about three weeks ago I got this odd pain

    that went from my neck into my left scapula area. I went to the chiropractor and had an adjustment. Felt somewhat better for just a couple of hours. Finally I got my orthopedic friend to give me an injection of steroids for inflammation. Didn't help at all. In fact the pain...
    ornursetab ornursetab
    41-45, F
    2 Responses Sep 21, 2014

    I am in my second go round with this dreaded

    condition. Fortunately both times I was quickly diagnosed by competent medical professionals. The first time, 4 years ago, I had bilateral PTS. The pain was in both arms below the elbow. I lost the use of my thumb and index finger on both arms. I am still suffering long term...
    SacBill SacBill
    51-55, M
    Sep 21, 2015

    It Has Only Been A Week

    As I write this it has only been one week since the onset of my symptoms. I was lucky enough to be seen by many incredible doctors who have diagnosed me with PTS. It all started a week ago when at 7pm I was eating dinner with my friends and by 8 I felt like I was getting...
    danceswithangels danceswithangels
    22-25, F
    1 Response Apr 21, 2013

    A little more than 2 weeks ago I started having

    pain in my right shoulder blade. The pain was so bad that I had to call out of work and go to the doctor. I thought I worked out too hard or moved too many boxes moving into a new house. The doctor told me it was muscles spasms and put me on Prednisone for 12 days. Ucky stuff...
    ellen60 ellen60
    56-60, F
    3 Responses Jan 16, 2014

    Knifelike Back Pain, Chest Muscle, Biceps, Triceps, And Latissumus Wasting,

    The title of my story is what guided me to the right diagnosis on the internet. 2 years ago, I began to have severe 10/10 periscapular pain (pain along the medial border of the scapula) that was unrelenting and unbelievable. It felt like an ice pick stuck into my back along my...
    bobbyp117 bobbyp117
    36-40
    Jun 25, 2013

    Parsonage Turner Syndrome Following Flu Shot

    You know how you just know something is wrong with you and despite everyone around you thinking you are crazy, you just know it. Well, I have felt like that for quite some time. I started out with feet problems which after much ado was turned into a diagnosis of advanced...
    graceisgood graceisgood
    51-55
    4 Responses Sep 6, 2011

    Have Parsonage Turner Syndrome !h

    You need to be under a neuroligists care bottomline for this ailment. It is nerve neuropathy....mine caused from Hepatitis a vaccination.
    rkraus rkraus
    66-70, F
    Sep 27, 2013

    Live near NYC, does anyone know a hospital

    that specializes in PTS? Two rotator cuff surgeries on left shoulder, 15 months of PT and now have PTS. In pain frequently and wake up 5++ times/night because of it.
    satsmo satsmo
    46-50, M
    May 28, 2015

    Cure to PTS Go to GNC

    and buy viamin b, fish oil, lecithin, and arginine supplements. Get the tablets. Take a dose of two tablets of each every morning and every night. Once the acute pain subsides, begin physical therapy to recover the strength. This will take time, but keep taking the supplements...
    ljade18 ljade18
    26-30, M
    1 Response May 27, 2015

    Sheer Hell

    No different to many of the others i have read about. November 2010 woke in the morning with a stiff neck and thought dam i must of slept funny, if only i knew what was to come. 2 days later the most intense searing pain in my shoulder arm neck everywhere in and around the right...
    tezbucks tezbucks
    36-40
    8 Responses Dec 7, 2011

    Parsonage Turner Syndrome

    Okay, woken up about 4AM with excrutiating pain in my left shoulder. Worst thing I've ever felt. It had been two days since I had been in the gym doing seated shoulder presses so I thought I just went a bit too hard at the gym that day, but it was like the worst muscle pain ever...
    bdragon76 bdragon76
    31-35
    2 Responses Jun 22, 2010

    Pts Pain Over Time?

    For all of you out there who have also been diagnosed with PTS, I have a question. What does the pain do over time? I was diagnosed about 5 weeks ago, and while the excruciating pain decreased after the first two weeks, I still have a strong burning, dull, deep ache in the back...
    tiogaone tiogaone
    46-50, F
    3 Responses Apr 26, 2012

    Five years ago I woke up with my shoulder

    feeling a little out of socket. I remembered sleeping on a hard surface and waking up in the same shoulder pinning position that I had fallen asleep in. I was 37ish and felt too dang good to be having a heart attack. But, I have to admit, it felt like I would think that a...
    mdmad mdmad
    41-45, M
    2 Responses Jan 2, 2014

    Out of the Blue

    I awoke one morning 5 yrs ago with terrible pain in my right shoulder/back and assumed I'd slept horribly wrong since I'd had no injury. After a few days I finally went to the emergency room the pain was so bad. It took 6 months of MRIs, CT scans, nerve conduction tests, and...
    zillaron zillaron
    51-55, M
    29 Responses Sep 5, 2009

    I Have Parsonage Turner Syndrome.

    I was diagnosed 13 years ago. I was 18 then. I had a couple occurances when I was 2 and then again at 8 years old, but they didn't know what it was. It has happened on my right side every time. I am currently going through it again. The pain is so bad this time...
    crispysyn crispysyn
    31-35, M
    4 Responses Jan 19, 2010

    I Actually Have Recurring Parsonage-turner Syndrome

        A few months ago I read with acute interest the account by ResonantBlueHand entitled "The Struggle, the Pain, and Miss Diagnosis." Other than my being a 50 year old male, ResonantBlueHand's story could have literally been chapter three in my own story...
    mmkjc23 mmkjc23
    46-50
    25 Responses Nov 3, 2009

    I was diagnosed with PTS almost 3 years ago

    after undergoing surgery to remove a bone spur. I still don’t have full use of my arm and still suffer pain, but have learned what works best to reduce pain and facilitate healing. My hope is that at least someone can benefit from my experience! Here are my recommendations...
    PDG1 PDG1
    46-50
    1 Response Jul 27, 2015

    2nd Time Around With PTS

    I got PTS the first time around when I was 28 years old in 1998. I had a lymphnode removed in my neck and got PTS from the surgery. It took 6 months for the doctors to figure out what was wrong with me. I spent a long time in PT but, unfortunately some of the muscles in my...
    Kathie1970 Kathie1970
    46-50, F
    Sep 30, 2013

    Pts

    5 Years ago when I was 22 I had severe pain in my right shoulder, the doctor advised it was a trapped nerve and I was sent on my merry way, after about4-5 week of agonising pain I woke early hours not being able to move my arm at all. I went to A&E who had no clue what was...
    JenOsca JenOsca
    26-30
    3 Responses Apr 12, 2011

    I Just Got Diagnosed With PTS.

    It started a week ego with sever pain in back of my shoulder. After a couple of days it started also hurting in my arm and hand with very sharp pain. I started also feeling very week in my hand. It got much worse as days went on to the point I couldn't use my hand. I went to my...
    sangard sangard
    46-50, M
    Sep 25, 2013

    March 29 2009

    I was just diagnosed with Parsonage Turner Syndrome (Brachial Neuritis) two days ago and was hoping to see how others have gone through this. I have read that most people recover within 3 years so this is good news. I had the classic symptoms of severe pain in my left lower...
    5071PC 5071PC
    51-55
    7 Responses Mar 29, 2009

    Just diagnosed this week

    although they called it neuralgic amyotrophy. I believe there is another name for it as well, do you know? Does this all mean our immune system has attacked our nerve sheath? I am confused about this. I had about a week and a half of shoulder pain which stopped four days ago...
    tickatocken tickatocken
    46-50, F
    1 Response Mar 28, 2015

    Lost

    I was told i had P T S in febuary this year, i went through the pain and  frustration that comes with it. I had seen a specialist ? or so i was. told, only to get a feeble answer that nothing can be done to treat me .I still dont  have any movement in my right...
    frankreynolds50 frankreynolds50
    51-55
    5 Responses Oct 13, 2010

    NEWS FLASH low dose of amitriptyline is a GOD

    SEND!!! I'm a year into PTS and have had pain the whole time, the neurologist is one smart cookie!!! Amitriptyline is a antidepressant but works for nerve pain and much more in a low dose. Headaches are gone, nerve pain at a manageable level. Only thing is to take it at the same...
    JadeWinslow JadeWinslow
    36-40, F
    Sep 8, 2015

    I Have Parsonage Turner Syndrome, So They Think And Its A Nightmare

    Hi to whoever reads this, on July 2nd 2010 I started with a tingling feeling in my little finger and ring finger and thought this would pass, it was the feeling you get as if you have sat on your hand if that makes any scene.  The following day it had spread...
    katieweb katieweb
    26-30
    6 Responses Nov 16, 2010

    Idiopathic Neuropathy - Carpal Tunnel - Parsonage Turner Syndrom

    Last November (2011) I awoke with paralysis on my thumb and first two fingers.  I saw my primary physician the next day.  On that day, I was examined and a neck x-ray was ordered, I also received a flu shot.  The next day, I awoke with numbeness and tingling in my 4th and 5th...
    alcamus55 alcamus55
    56-60
    2 Responses Jan 26, 2012

    Is here anyone with PTS

    who recovered 100% within two years? painfree, no atrophy?
    Tiliacordata10 Tiliacordata10
    26-30, F
    Jan 14

    Pts

    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...
    anseimotrp anseimotrp
    31-35
    10 Responses Oct 28, 2009

    Parsonage Turner Syndrome

    In 2005 I developed terrible pain in my right arm radiating from my right shoulder.  Pain and range of motion get worse daily.  Eventually I couldn't raise the arm past my heart, definetely couldn't reach for things and could barely pick anything up.  I definitely could not...
    teachr3000 teachr3000
    56-60
    1 Response Mar 28, 2011

    4th Time In 13 Years

    I started experiencing 'the pain' immediately after having minor surgery to remove a piece of bone in my elbow. That was in 2000. That episode took about 18 months to recover from. I went and had an MRI, which showed nothing and the dr couldn't figure out what was wrong. The next...
    CrBc CrBc
    36-40
    2 Responses Mar 15, 2013

    Possible Parsonage Turner Syndrome Recurring With Pregnancy

    In January 2010 I began experiencing pain in my left shoulder. I do not recall sudden onset of intense pain that has been described by others on here - more constant pain as if it is work just to keep my shoulder in place. I was 4 months pregnant and working a lot (typing a lot...
    nfranch nfranch
    26-30
    9 Responses Aug 23, 2011

    3 Time Reoccurance With No Official Diagnosis

    My journey began by waking up in the middle of the night and thinking someone had basically made my left arm one big tooth that needed a root canal. I actually screamed awake because my husband moved the sheet on the bed and it brushed against it. Went to the ER, I actually...
    LesJen LesJen
    41-45, F
    3 Responses Jul 28, 2011

    I have been diagnosed with Parsonage-Turner

    Syndrome (PTS) February 2011. One morning I woke up in serve pain. I thought I had slept wrong on my arm when the pain continued I went to see my PCP and she told me to see her orthopedic in her office. I made an appointment to see him and he gave me two steroid shoots in my...
    leroy79 leroy79
    36-40, M
    1 Response Dec 29, 2013

    I started with pain at the first of January.

    Woke up one morning with the feeling that I was being stabbed in the shoulder with a knife. Used heat/ice thinking I had pulled a muscle. Went to Doc in a Box and was told that it might be shingles, given pain medication(that didn't help) and told to make an appointment with...
    msv123 msv123
    56-60, F
    2 Responses Apr 16, 2014

    It Turned Out Not To Be A Trapped Nerve

    Similar to others, I woke up one morning to a very sore shoulder from nowhere. I had returned from a snowboarding trip unscathed two weeks previously and the doctor initially said it was a frozen shoulder. Their next diagnosis was a trapped nerve and I had excruciating pain all...
    daviehooks daviehooks
    31-35
    8 Responses Oct 4, 2011
    Skhm Skhm
    51-55
    Aug 12, 2015

    It's been a year now

    since my first pain symptom. I also thought it was working out or doing something sports related. I am a very fit 33 year old who eats right and takes care of myself I thought. I started going to the doctors last February because my right shoulder started hurting. It felt like...
    MatthewW1980 MatthewW1980
    36-40, M
    4 Responses Feb 19, 2014

    I was diagnosed with exactly same thing

    as you plus a swollen sc collarbone joint. I went thru 2months of 6mri and X-ray s and blood test ect first though. My name is Stephanie and o am a runner who is very fit but this happen to me and I'm still going thru recovery. Difference is I am missing my left arm dur to a...
    Skhm Skhm
    51-55
    1 Response Aug 12, 2015

    3 Years And Counting

    I woke up one night 3 years ago with severe pain in my right arm. Thinking I has just slept wrong I went to the couch to watch TV and wait for some Tylenol to kick in. Within an hour the pain was so bad I had to wake up my husband and rush to the ER. While there the pain shot...
    meand13others meand13others
    41-45, F
    2 Responses Aug 10, 2012

    Hi I'm 24 years old and currently being

    diagnosed with pts. 5 months ago I had my first symptom which came out of no where and was severe! I have had sooo many tests as you would all know.... & nothing is showing up! I can't explain the pain to anyone as its soooo hard to describe! I was a graduate teacher last...
    megzeee megzeee
    26-30, F
    2 Responses Feb 18, 2015

    I like most people I have read on woke up in

    the middle of the night in really bad pain in my left sholder/back/neck I had no sleep work next day and caryed on at work for 3 months in bad pain with no strength in the sholder I couldn't move my arm up at all for a few weeks and it felt like burning just something brushing...
    adammadadoow adammadadoow
    13-15, M
    1 Response Jan 8, 2014

    Hi all! I'm the mother of a nine year old

    who was diagnosed 2 years ago with the PTS. The pain started in his left shoulder 3 years ago(he was 6) after a flu shot ( swine vaccine). The pain went away after 3 weeks with no diagnosed and he never again complained. He move his arm normally, but after a few month I started...
    Cibaena Cibaena
    41-45, M
    2 Responses May 23, 2014
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