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?

@chriso12345

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

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I’m sorry you have been diagnosed with PTS. My advice is to read as much as you can about it. The good news is that it does improve in time. It is different for each person. I’ve read that steroids can be effective if done early on. I’m sure your doctor is aware of this. The progression of mine was a lot different from yours. It was 11-12 weeks before the pain went to my right hand after first having had severe shoulder pain. It has been 20 months for me and my pain is still getting worse. Both my hands are affected along with my right forearm. I take opioids and Lyrica for pain. They help some but I still have a lot of pain. Compression gloves help me a lot. I use Isotoner gloves. They are easy to get on and off and have a good stretch to them. It’s important to get the right size. I just ordered a compression sleeve for my arm. I know this will help too. I use heating pads all the time. I purchased one that I can put my hand into and it feels very good. I’ve tried several types of creams. None worked on my pain. I’ve tried acupuncture and cupping and they didn’t help my pain. I’ve tried CBD oil and medical marijuana. They didn’t help either. One thing I have started doing is listening to meditation music on the internet. It can be very relaxing. As I said, PTS is different for everyone. Hopefully one of the treatments I’ve mentioned will help you. Good luck! Stay strong!

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@lisalucier

Hi, @chriso12345 – As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

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The Gabapentin does help, but it seems to wear off after a few hours, so it's a bit like riding a roller coaster. It's about 3:30 a.m. and I wish I was asleep. I'm taking a low dose during the day and a higher dose around 8 p.m. to try and sleep. On good nights I sleep about 7 hours. Fuzzy in the morning if I take it any later.

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@patrick17

I’m sorry you have been diagnosed with PTS. My advice is to read as much as you can about it. The good news is that it does improve in time. It is different for each person. I’ve read that steroids can be effective if done early on. I’m sure your doctor is aware of this. The progression of mine was a lot different from yours. It was 11-12 weeks before the pain went to my right hand after first having had severe shoulder pain. It has been 20 months for me and my pain is still getting worse. Both my hands are affected along with my right forearm. I take opioids and Lyrica for pain. They help some but I still have a lot of pain. Compression gloves help me a lot. I use Isotoner gloves. They are easy to get on and off and have a good stretch to them. It’s important to get the right size. I just ordered a compression sleeve for my arm. I know this will help too. I use heating pads all the time. I purchased one that I can put my hand into and it feels very good. I’ve tried several types of creams. None worked on my pain. I’ve tried acupuncture and cupping and they didn’t help my pain. I’ve tried CBD oil and medical marijuana. They didn’t help either. One thing I have started doing is listening to meditation music on the internet. It can be very relaxing. As I said, PTS is different for everyone. Hopefully one of the treatments I’ve mentioned will help you. Good luck! Stay strong!

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@patrick17 Yes, reading has helped. There just doesn't seem to be a lot of information available online. It was surprising, but I guess it's just not that common. I plan to ask my doctor how many cases he has seen at my next appointment. I get the impression that it won't be many. Luckily he checks with another doctor in the practice and I think that's why the diagnosis was so quick. Doctor #2 did my EMG and ultrasound. Very thorough. I so sorry that your pain has lasted this long and is getting worse. Thank you for the suggestions! I received a pair of compression gloves on Thursday. Although I measured per instructions, they seem too tight so will trade up to see what a larger size will do. Going to the library today to investigate books about pain management. Meditation as well. Normally I read on phone or iPad but touching these with my right hand is painful, so it's back to physical books for me. Thanks for the encouragement! I hope you find more solutions for your pain.

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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, 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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@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.

REPLY
@chriso12345

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

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I'm so sorry to hear this. I also have PTS bilateral so both hands and arms. I have been suffering for over 2 years. Gabapentin and opioids are the only thing that seems to help a bit. I've tried several types of Cannabis. Found no miracles yet. I'm going to try acupuncture next plus lots of prayer.

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@confused1955

I'm so sorry to hear this. I also have PTS bilateral so both hands and arms. I have been suffering for over 2 years. Gabapentin and opioids are the only thing that seems to help a bit. I've tried several types of Cannabis. Found no miracles yet. I'm going to try acupuncture next plus lots of prayer.

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@confused1955 So sorry that yours is in both hand and arms. Reading through everyone’s comments, it doesn’t like cannabis has helped many folks with PTS. Hope acupuncture and prayer do the job for you.

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@adriennes

I also have PTS, I felt your pain literally. I have a rare form, involving medial, radial and ulnar nerves. I’m a year in, all I can tell you is use heat and ice, do you have a tens unit? It helps me get movement in my arm and fingers, I walk but I understand you can’t, time is all the dr’s can tell me, it is very slow and painful, most people recover in a year or two. I was told most of my hand and forearm deficits will be permanent, I refuse that diagnosis, work the muscles you can with range of motion, don’t over work, it is a very long recovery. My heart and prayers go out to you.

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It seems I have they same rare form where I have lost they ability to open my right hand and have about 20% strength in my grip strength, wrist and tricep. I'm only a couple months in and my hand and forearm are starting to look like a skeleton from the muscle wasting. I've always been a big strong guy and work out often and this is devastating to me. It's been a year since this post that I'm replying to… any words of encouragement?

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@briannave

It seems I have they same rare form where I have lost they ability to open my right hand and have about 20% strength in my grip strength, wrist and tricep. I'm only a couple months in and my hand and forearm are starting to look like a skeleton from the muscle wasting. I've always been a big strong guy and work out often and this is devastating to me. It's been a year since this post that I'm replying to… any words of encouragement?

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Mine hit me had as well. I was working out 5 or 6 times a week. Have you tried physical therapy? They helped me find movements I could do. Ultimately my doctor's diagnosed me with thymoma which is a rare cancer often associated with auto immune conditions. The removal of that time really seems to have resolved things but I still have a small deficit.

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@briannave

It seems I have they same rare form where I have lost they ability to open my right hand and have about 20% strength in my grip strength, wrist and tricep. I'm only a couple months in and my hand and forearm are starting to look like a skeleton from the muscle wasting. I've always been a big strong guy and work out often and this is devastating to me. It's been a year since this post that I'm replying to… any words of encouragement?

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I’m so sorry for your condition. At least you have been diagnosed early. I have kept a timeline of my condition on the computer. Sometimes when I see a new doctor I will give him/her a copy. Anyway, it’s good to be able to look back and see how things have progressed and how I have been treated. I’m sure it is devastating for you since you were so used to working out. Hopefully your condition will be temporary. Most people with PTS do get better in time. Try to focus on what you can do instead of what you can’t do. Get yourself a good pain management doctor. Try listening to meditation music. It can be very calming. You will look at the world differently now. This takes a lot of patience and acceptance. I hope you will recover to your full strength!

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Thank you for sharing this information. I’m sorry for your pain – I go through periods of numbness from my neck to finger tips and also my hips to legs. They couldn’t figure out what was causing it. They did perform an elecgromyography but didn’t show issues. I have chronic neck and shoulder pain – they tried to do a cortisone injection but the discs in my neck were to close together (due to bulging) that they were not able to insert the needle. Appreciate information since it described what I experienced. Heat definately helps!! Love my heating pads. Best of luck and hope you feel better soon.

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@missme

Thank you for sharing this information. I’m sorry for your pain – I go through periods of numbness from my neck to finger tips and also my hips to legs. They couldn’t figure out what was causing it. They did perform an elecgromyography but didn’t show issues. I have chronic neck and shoulder pain – they tried to do a cortisone injection but the discs in my neck were to close together (due to bulging) that they were not able to insert the needle. Appreciate information since it described what I experienced. Heat definately helps!! Love my heating pads. Best of luck and hope you feel better soon.

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When looking back on my ordeal, heat was great and knowing what I do now I would have used it more. If you need a good nights sleep then get one or two hot water bottles. I used them all day. My period of pan was just under six months. It did straight after two weeks easy living in on Miami beech. I just want to send my dearest sympathy to anyone going through this as no one really can understand the pain.

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@missme

Thank you for sharing this information. I’m sorry for your pain – I go through periods of numbness from my neck to finger tips and also my hips to legs. They couldn’t figure out what was causing it. They did perform an elecgromyography but didn’t show issues. I have chronic neck and shoulder pain – they tried to do a cortisone injection but the discs in my neck were to close together (due to bulging) that they were not able to insert the needle. Appreciate information since it described what I experienced. Heat definately helps!! Love my heating pads. Best of luck and hope you feel better soon.

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Another thing I found extremely helpful was a product called Thermacare Heat Wraps…they are made for neck, back, knees, etc. They are air activated and have adhesive to apply to your body. They last from 8-12 hours – best part you can conceal them under your clothing during the day or leave them on at night and no cords. They are really helpful – you can’t control the heat level but I have found them to be very helpful and convenient to use when I can’t apply a heating pad or plug one in..sleeping is much easier with them on instead of plugging in my heating pad. Hope this is helpful.

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