Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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MS patients

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@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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Multiple sclerosis sorry spell check, I feel for you, no one can know how this feels I appreciate hearing from you so much!

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@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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Hi @kimee I am so sorry for your pain. What tests have you had done? My doctors seemed keen on differentiating pain coming from the spinal nerve (like with a bulge) vs. some sort of peripheral neuropathy. They didn’t see anything on the MRI at all but something in the EMG nerve test caused me to be tossed into the PTS basket. I am not entirely convinced. It could be brachial neuritis, idiopathic (no better), or in my case a loose screw in the fusion hardware (not the first time)! So hard to get answers!! I am told “be patient and take your pain meds.” Well today I had to go up on my pain meds because lower dose stopped working. I am not cool with that

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@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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I would get second and third opinions. Doctors/hospitals should give you copies of any radiology on CD with reports. Always get reports from every doctor visit. I even spreadsheet my lab reports to see when infection/inflamation markers go up and down. Nobody figured out why when I was given antibiotics for bronchitis, etc. that it helped more than that. Turned out I had a big gall bladder infection. Doc reports will say they checked throat, eyes, stomach palpation's but during that visit YOU KNOW, they didn't do that as you have them mail you copies of labs and everything. After 4 years of losing 70#'s and looking like hell, I am finally coming back and that is AFTER they removed gall bladder and treated me for candida. I feel my neuropathy and calcinosis is a by product of the prescriptions they gave me. Good luck but document everything in a diary and talk to doctors about their office visit notes if you don't understand something.

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My 25 year old son has recently been diagnosed with PTS. does anyone know a direct cause?? His pain and symptoms have occurred twice, both 5 years apart, the first after ankle reconstruction surgery and the second which he is experiencing now, after emergency colon surgery. What is the possible link? Positioning during surgery, an anesthesia agent used in both surgeries, etc…? At a loss!

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Without wanting to sound trite, no one knows. But it is associated with post surgery conditions. It is an auto immune attack on your nerves, typically brachial plexus. Mine appeared to be associated with a thymoma, a very rare cancer that was well treated and my symptoms have resolved. You should at least have thymoma ruled out.

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It took a long time for me to get a correct diagnosis for Turner Parsonage Syndrome. The onset of the nerve death was one of the most painful things I've ever experienced. At first it was diagnosed as bursitis, then rotator cuff. It was a physical therapist who noted that I had atrophy of my deltoid muscle. After some research I found the Nuro-Muscular clinic at Oregon Health & Science University in Portland, Oregon. They used an EMG test to confirm that the nerve from my spine to my deltoid was gone. The suspicion is that two things led to this event. One was a impingement of the nerve from a competitive game of table tennis, marked by two sharp incidents in my shoulder that day, and this coincided with the onset of a virus that I came down with that evening. A lot of folks were getting this virus, with symptoms of a fever and some body aches. The doctors concluded that the white blood cells found the inflamed nerve while they were wiping out the virus, and took the nerve out along with the virus. My doctors told me that exercise would not help the deltoid, as it was like trying to turn a lamp on and off without it being plugged in. If the nerve grew back, then exercise would be helpful. I would add that careful exercise would probable help the surrounding muscles to support the shoulder. I was lucky, and after about 18 months my nerve had grown back, and I recovered about 95% of my nerve and muscular ability. I feel that some physical work and some exercises I did while I was lacking my deltoid actually added some injury to my shoulder. So be careful about not over-using weakened areas.

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Hello @rubato,

Welcome to Connect; thank you so much for sharing your experience. You bring up a very good point about "over-using weakened areas, " and I thought you might also like to read this Mayo Clinic article about physical therapy when diagnosed with this condition:
https://newsnetwork.mayoclinic.org/discussion/recovery-time-from-disorder-affecting-nerves-that-control-shoulder-arm-and-hand-can-vary/

May I ask if any medication helped in the recovery process?

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@ckbray

My 25 year old son has recently been diagnosed with PTS. does anyone know a direct cause?? His pain and symptoms have occurred twice, both 5 years apart, the first after ankle reconstruction surgery and the second which he is experiencing now, after emergency colon surgery. What is the possible link? Positioning during surgery, an anesthesia agent used in both surgeries, etc…? At a loss!

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How was he diagnosed? Hub had surgery not in horrid pain…over 4 nths of bad had neurologist do test said something in neck. I see he has stabbing in shoulder area where clean out surgery was done, and pain radiating down arm to fingers. How do you diagnose pts? What Drs are fail are with condition? What do you do to help yr don?

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@ckbray

My 25 year old son has recently been diagnosed with PTS. does anyone know a direct cause?? His pain and symptoms have occurred twice, both 5 years apart, the first after ankle reconstruction surgery and the second which he is experiencing now, after emergency colon surgery. What is the possible link? Positioning during surgery, an anesthesia agent used in both surgeries, etc…? At a loss!

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Hi @ckbray,

I'm sorry to hear about your son, and wanted to mention some information I found on NORD (National Organization for Rare Diseases). Unfortunately the exact or underlying cause of PTS is not fully understood, and it is believed that most cases result from an immune-or inflammatory response to some infection or environmental trigger that damages the nerves of the brachial plexus. You can read more details here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/

The surgeries could very well have triggered PTS; what does the doctor say? How is your son coping with the discomfort and pain?

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In August 2017 I was diagnosed with an atypical presentation of Parsonage Turner Syndrome. It has now been 15 months since I experienced severe right shoulder pain. This lasted for about two weeks, and then I started to get tingling and numbness in my right forearm. Over time this progressed to my thumb, index and middle fingers of my right hand. My forearm and especially my hand became quite painful. An MRI of my neck showed something pressing against a nerve at C6-C7. An EMG test was also performed.

Anterior cervical discectomy and fusion (ACDF) surgery was performed at C6-C7 at the end of May 2017. While the surgery went well, it did nothing to relieve the pain in my right arm or hand. To make matters worse, two weeks after my surgery I began to feel the same tingling, numbness, and pain in my thumb, index, and middle fingers of my left hand. Ugh!

I have had several MRI’s, EMG’s, and other tests and have been seen by two neurologists. This led to the diagnosis of PTS. After 15 months I am no better. In fact, the pain in my right arm and both hands is getting worse.

During this whole time, my feet have been numb, but fortunately have been without pain. Lately, the numbness in my feet has been more noticeable and has spread to my calves. Has anyone who has been diagnosed with PTS also experienced numbness in your feet? If so, I would be very interested in hearing from you or anyone else who has suffered with PTS for any length of time. Thank you!

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@patrick17

In August 2017 I was diagnosed with an atypical presentation of Parsonage Turner Syndrome. It has now been 15 months since I experienced severe right shoulder pain. This lasted for about two weeks, and then I started to get tingling and numbness in my right forearm. Over time this progressed to my thumb, index and middle fingers of my right hand. My forearm and especially my hand became quite painful. An MRI of my neck showed something pressing against a nerve at C6-C7. An EMG test was also performed.

Anterior cervical discectomy and fusion (ACDF) surgery was performed at C6-C7 at the end of May 2017. While the surgery went well, it did nothing to relieve the pain in my right arm or hand. To make matters worse, two weeks after my surgery I began to feel the same tingling, numbness, and pain in my thumb, index, and middle fingers of my left hand. Ugh!

I have had several MRI’s, EMG’s, and other tests and have been seen by two neurologists. This led to the diagnosis of PTS. After 15 months I am no better. In fact, the pain in my right arm and both hands is getting worse.

During this whole time, my feet have been numb, but fortunately have been without pain. Lately, the numbness in my feet has been more noticeable and has spread to my calves. Has anyone who has been diagnosed with PTS also experienced numbness in your feet? If so, I would be very interested in hearing from you or anyone else who has suffered with PTS for any length of time. Thank you!

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Patrick, I've moved your posts to this group discussion so that you can meet others talking about Parsonnage Turner syndrome like @adriennes @andylevine @painful @rubato @arlenej and others. Simply click VIEW & REPLY to scroll through the past messages.

I too would be interested if others who have PTS experience numbness in the calves and/or feet.

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I did not experience that. Maybe they are missing neuropathy here.

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@patrick17

In August 2017 I was diagnosed with an atypical presentation of Parsonage Turner Syndrome. It has now been 15 months since I experienced severe right shoulder pain. This lasted for about two weeks, and then I started to get tingling and numbness in my right forearm. Over time this progressed to my thumb, index and middle fingers of my right hand. My forearm and especially my hand became quite painful. An MRI of my neck showed something pressing against a nerve at C6-C7. An EMG test was also performed.

Anterior cervical discectomy and fusion (ACDF) surgery was performed at C6-C7 at the end of May 2017. While the surgery went well, it did nothing to relieve the pain in my right arm or hand. To make matters worse, two weeks after my surgery I began to feel the same tingling, numbness, and pain in my thumb, index, and middle fingers of my left hand. Ugh!

I have had several MRI’s, EMG’s, and other tests and have been seen by two neurologists. This led to the diagnosis of PTS. After 15 months I am no better. In fact, the pain in my right arm and both hands is getting worse.

During this whole time, my feet have been numb, but fortunately have been without pain. Lately, the numbness in my feet has been more noticeable and has spread to my calves. Has anyone who has been diagnosed with PTS also experienced numbness in your feet? If so, I would be very interested in hearing from you or anyone else who has suffered with PTS for any length of time. Thank you!

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Hub had surgery. Since 6 months stabbing right shoulder radiating pain down arm annoy hold pen. Has neck issues too. No emg conclusions from 2 nerve tests. What is determining test to confirm what I suspect? Oh also numbness in toes and left shoulder bothersome

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What test confirmed pts?

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