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?

@johnbishop

Hello @texasmama, welcome to Connect. I'm sorry your daughter has to deal with this disease at such a young age. I know it's hard for you also and I thank you for being an advocate for her. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @ethanmcconkey to see if he is able to offer some other suggestions or possibly move your post this discussion for more visibility.

Groups > Brain & Nervous System > Parsonage turner syndrome *
https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@texasmama has your daughter's doctors discussed any treatment plan or suggestions to help your daughter?

John

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Thanks for the info John. And no. Not a single suggestion or treatment plan. One ortho surgeon suggested we see a specialist on scapulas if WE didn’t want to go along with PTS. It’s been a very confusing time. I would appreciate it if you would move the post to PTS.. seems like A LOT more info there

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@texasmama

My 19 year old daughter was a promising volleyball player. She had been recruited to several colleges and committed to playing. However, in January of her senior year of HS she developed what we thought was a pulled muscle on top of her trapezoid by her neck. She had had a very busy few weeks as she had played in two tournaments rarely seeing the bench for a rest. The first tourney however she was quite sick with a fever and flu like symptoms so she sat out the first two days. A month later the knot on top was gone, but the soreness and stiffness remained and she would often be seen rubbing on top of her shoulder or near her neck. We saw our chiropractor initially then moved on to the physician who assured us rest would help. After a few months the pain now radiated into her shoulder. She saw an ortho doc to rule out any impingement or rotator cuff issues. She had MRI and it came back clear with some tendinitis near the shoulder. Rest and ice. She went off to play in college still having pain. Three a day hell weeks pushed her over the edge and she was having constant pain. A month later she came to visit and her scapula was winged WAY out on the same side and she was now feeling scapula pain. She has now been seen by three ortho surgeons, a neurologist who performed EMG who now say she has Parsonage Turner Syndrome.. they think. It’s been 20months now since the initial lump. She has quit volleyball and has ongoing pain radiating from her trap down into her scapula and shoulder. She has nerve damage on several nerves and weakened muscles. I wouldn’t allow them to put her on pain medication except for ibuprofen so that’s all she’s taking. BUT.. there are times she is in a lot of pain and can’t use the arm to reach for things. Rarely picks things up, has problems using that arm and hand to open things. We have tried PT for the last year. Cupping seemed to help the most. I’m just at a loss as to what to do. NONE of these doctors offer hope or even direction for us. Just… she doesn’t need shoulder surgery. We were told it would take two years for her to be well by the neurologist, but it’s almost that time and I don’t see that it’s improved much. It still wakes her sometimes. She can’t travel for hours in the car without her arm aching for weeks in the future. She said writing notes in class is sometimes a chore. Does ANYONE have ANY advice or hope or direction. I cry thinking about my 5’10” beast of a hitter to a girl who has a hard time raising her arm. She’s in college for nursing and I wonder sometimes if she will even be able to perform the tasks in her career future!! I will mention two things also that seemed random and non related but sometimes I wonder… when she was 17 she developed “trigger finger” and had to have tendon release surgery. They stated it wasn’t an uncommon thing for basketball and volleyball players to get since they “jamb” their fingers. Second thing is she had weird stuff happen in high school like sweating an enormous amount even just sitting in a normal temp room. She also passed out a few times (both was the first day of her period) and we were told it was her heavy blood
Loss and her body’s response to fight or flight. The sweating we were told was just a kid who sweat a lot. That’s all.. if anyone has any offering I would be so grateful to hear.

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Hello @texasmama– I'm so sorry to hear that you and your family have been brought to a halt by this. My sisters all played volleyball in school and in college- it's their life and they live for it. I imagine its been extremely tough.

Have you thought about traveling to Mayo orthopedics and getting another opinion? I can imagine the cost and frustration with putting time into explaining her symptoms to yet another physician but I believe in Mayo Clinic and the cases that the physicians see are sometimes things they have seen before with other patients that have also made the journey as a last resort. As well as the access that Mayo physicians have to other specialties within the same facility. Keep doing research, read the medical journals, look for information within Mayo's YouTube, Facebook pages, read and reach out to the others here on connect at the link John gave you in the above post and research pages. You are bound to find someone to give you some answers.

From one mama to another- strength and peace. Please come back and give us an update. Future parents looking for information will thank you!

I will move the conversation to the already existing PTS conversation taking place.

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Jump to this post

My 19 year old daughter was a promising volleyball player. She had been recruited to several colleges and committed to playing. However, in January of her senior year of HS she developed what we thought was a pulled muscle on top of her trapezoid by her neck. She had had a very busy few weeks as she had played in two tournaments rarely seeing the bench for a rest. The first tourney however she was quite sick with a fever and flu like symptoms so she sat out the first two days. A month later the knot on top was gone, but the soreness and stiffness remained and she would often be seen rubbing on top of her shoulder or near her neck. We saw our chiropractor initially then moved on to the physician who assured us rest would help. After a few months the pain now radiated into her shoulder. She saw an ortho doc to rule out any impingement or rotator cuff issues. She had MRI and it came back clear with some tendinitis near the shoulder. Rest and ice. She went off to play in college still having pain. Three a day hell weeks pushed her over the edge and she was having constant pain. A month later she came to visit and her scapula was winged WAY out on the same side and she was now feeling scapula pain. She has now been seen by three ortho surgeons, a neurologist who performed EMG who now say she has Parsonage Turner Syndrome.. they think. It’s been 20months now since the initial lump. She has quit volleyball and has ongoing pain radiating from her trap down into her scapula and shoulder. She has nerve damage on several nerves and weakened muscles. I wouldn’t allow them to put her on pain medication except for ibuprofen so that’s all she’s taking. BUT.. there are times she is in a lot of pain and can’t use the arm to reach for things. Rarely picks things up, has problems using that arm and hand to open things. We have tried PT for the last year. Cupping seemed to help the most. I’m just at a loss as to what to do. NONE of these doctors offer hope or even direction for us. Just… she doesn’t need shoulder surgery. We were told it would take two years for her to be well by the neurologist, but it’s almost that time and I don’t see that it’s improved much. It still wakes her sometimes. She can’t travel for hours in the car without her arm aching for weeks in the future. She said writing notes in class is sometimes a chore. Does ANYONE have ANY advice or hope or direction. I cry thinking about my 5’10” beast of a hitter to a girl who has a hard time raising her arm. She’s in college for nursing and I wonder sometimes if she will even be able to perform the tasks in her career future!! I will mention two things also that seemed random and non related but sometimes I wonder… when she was 17 she developed “trigger finger” and had to have tendon release surgery. They stated it wasn’t an uncommon thing for basketball and volleyball players to get since they “jamb” their fingers. Second thing is she had weird stuff happen in high school like sweating an enormous amount even just sitting in a normal temp room. She also passed out a few times (both was the first day of her period) and we were told it was her heavy blood
Loss and her body’s response to fight or flight. The sweating we were told was just a kid who sweat a lot. That’s all.. if anyone has any offering I would be so grateful to hear.

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Hi, @shazzah73 – welcome to Mayo Clinic Connect. I can imagine it would be concerning to wonder if your Parsonage Turner Syndrome (PTS) has returned, with the pain in your shoulder and radiating down your arm and a tender spot on your shoulder. Hoping that some of the members in this discussion may have some input for you, like @tmachian @confused1955 @patrick17 @survivingpts @jjspokane61 @chriso12345.

Have you had the chance to talk to your doctor's office about these symptoms, @shazzah73?

@adriennes – hoping that some of these same members I've tagged here will let you know if they have experienced the effects of PTS in the medial, ulnar and radial nerves, leaving them with prolonged pain, denervation, extreme weakness.

@adriennes – how have you managed your PTS thus far?

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My symptoms regarding this PTS is: Severe numbness in the face, which in turn is causing other issues (blurred vision, runny nose, feeling of imbalance etc) I have seen 7 doctors, none of whom can tell me why the numbness is in my face. I apparently have nerve damage in my neck (c4,5,6). I also have weakness in both shoulders. The only good thing is that I have no pain with this, that in itself makes me wonder what's really going on with me. Unfortunately, doctors are no help, nor are they really concerned.

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@lisalucier

Hi, @shazzah73 – welcome to Mayo Clinic Connect. I can imagine it would be concerning to wonder if your Parsonage Turner Syndrome (PTS) has returned, with the pain in your shoulder and radiating down your arm and a tender spot on your shoulder. Hoping that some of the members in this discussion may have some input for you, like @tmachian @confused1955 @patrick17 @survivingpts @jjspokane61 @chriso12345.

Have you had the chance to talk to your doctor's office about these symptoms, @shazzah73?

@adriennes – hoping that some of these same members I've tagged here will let you know if they have experienced the effects of PTS in the medial, ulnar and radial nerves, leaving them with prolonged pain, denervation, extreme weakness.

@adriennes – how have you managed your PTS thus far?

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@adriennes I am also female and most of my issues are in my median nerve in my right forearm and hand. I have significant and severe nerve damage in my hand. Plus the wasting of pronator in forearm. Also anterior interosseous syndrome.This started last September and is continuing to be a problem. I will say that things are gradually getting better. At first the ends of my fingers were so hypersensitive that I couldn’t stand touching anything, particularly metal. Since I spend my workday at a computer typing was terrible, and I spent several weeks typing one-handed. I still can only use the mouse with my left hand so that’s been fun since I’m right handed. The other thing that’s been helpful is that I am a remote employee so no one in my office really knows what I went through. Although that’s a double-edged sword because I think if I was in the office I would’ve been on disability instead of doing nothing but work and then sitting on the couch with a heating pad for a number of weeks. It’s like I lost about two plus months of my life, but I’m not going to complain too much because many folks here have it much worse. PT was great, best thing about it was understanding that it’s necessary to push myself to get better. Are you able to do any PT yet?

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I know I've said this in the past (and it did help one other person) but my strange Parsonage symptoms resolved when my thymus was removed. It's a very obscure organ but seems related to several rare auto- immune conditions. I had a thymoma, which is cancer of the thymus. A simple x-ray image of the thymus would rule that out.

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I have been diagnosed with Parsonage Turner Syndrome. MY left arm and shoulder are affected. I have be prescribed 25mg Amatrypeline daily. I am fiding that I am extremely moody, can the Amatrypeline cause this?

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@paulsheasby

I have been diagnosed with Parsonage Turner Syndrome. MY left arm and shoulder are affected. I have be prescribed 25mg Amatrypeline daily. I am fiding that I am extremely moody, can the Amatrypeline cause this?

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Hello @paulsheasby, welcome to Mayo Clinic Connect. There is another discussion on Parsonage Turner Syndrome where your post will have more visibility and you can meet other members sharing your health condition and symptoms. I'm tagging our moderator @lisalucier to see if we should move your post here for more visibility:

Groups > Brain & Nervous System > Parsonage turner syndrome *
https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

Mayo Clinic has some information on the side effects of Amitriptyline here:
https://www.mayoclinic.org/drugs-supplements/amitriptyline-oral-route/side-effects/drg-20072061

Have you asked your doctor or pharmacist about the side effects of the drug? Maybe there is an alternative medication they can recommend.

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@shazzah73

I was diagnosed Parsonage Turner about 8 years ago. I mostly recovered but still have problems with fine motor skills in my hand.
2 days ago out of nowhere my same shoulder started hurting pretty badly. Movement made it worse. Pain radiates down my arm. The pain is a bit less now but still there. I was wondering if Parsonage Turner has returned. What I do notice and I am not sure if that is a symptom of it is that a spot on the back of my shoulder is very tender to the touch, it hurts when I lean against it. I remember I had that 8 years ago too, when I was diagnose with PT.
Can anyone tell me if that is a symptom?

Thanks!

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Hello, I certainly hope you don’t have PTS a second time. Once is one time too many! I have had PTS for nearly two years. At least that’s what my neurologist believes I have. Having said that, my condition began with severe shoulder pain on the top of my right shoulder. As I recall, the severe pain lasted for a week or longer and was very tender to touch. After that it spread to my neck and other areas of my shoulder. It was about 4 – 6 weeks before I started to feel numbness and pain in my arm which eventually spread to my hand and three fingers. I’m sure PTS is different for everyone. I pray that you don’t have PTS and will recover from your pain soon!

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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Hello, I have had PTS for nearly two years. Like you, three nerves are affected in my right arm. They are the median, radial, and axillary nerves. I have had prolonged pain. Unfortunately, it’s become worse as time has gone on. I also have numbness and muscle weakness, although some arm muscles have become a little stronger. Compression gloves help a lot as does a heating pad. Meds help some, but being in a fog most of the time is as bad as the pain. I’ve tried many other things, but nothing was of any help to me. My pain management doctor has recommended a trial of a spinal cord stimulator. I hope to do this in the near future. I don’t think my case is typical of people with PTS. Pain usually becomes less, and they have more improvement by now. I sincerely hope your condition continues to get better.

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I get little relief from anything. Have been suffering with burning in my hands for almost 2 years. Mobility and strength have improved enough my thumb and pointing finger now meet again and I can pick up a pin. Not much else I can do cause when I touch anything the pain triples. I wear latex gloves periodicly throughout the day. It keeps my fingers from touching. I can touch my hair and the towel so I'm able to wash my hair. If I didn't have 8 other serious diseases maybe this one thing wouldn't be so bad. Stress seems to be the worst stresser. Good luck on your continued healing.

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