Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

Hi, @painful -- welcome to Mayo Clinic Connect. Glad you found us. In addition to the members here on this thread, also wanted you to meet @andylevine and @confused1955, who've also talked about Parsonage Turner Syndrome, as well as @rosemarya and @sandytoes.

You mentioned being in week 9. Is this the amount of time since your diagnosis?

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

Greetings to you all!
I was just diagnosed with PTS this morning. Have been reading nearly everything I can find on the topic and came across this group. At least I have an answer for the pain. Was mis-diagnosed by my Primary Care doc and by an ER doc when the pain became so extreme, I gave in and went to a local ER to get some answers, or so I thought.

My Ortho doc who did my Rotator cuff surgery on the same shoulder 3 years ago, gave me his diagnosis this morning. He placed me on Gabapentin & a Methylpredisolone dose pack. Hopefully these will begin to ease the nerves. Wondering what others take to help them sleep at night?

Glad there's a group like this who understands. Thanks for the add!

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.

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!

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.

Hi @adriennes -- It's been awhile since you last posted and I was wondering how you are doing. Have you found anything that helps with the pain and extreme weakness?

Have you thought about trying any other kind of alternative therapy? There is another discussion which covers pain from many different causes that may be worth checking out. I have degenerative disc disease and osteopenia which gives me lower back pain and makes it difficult to walk very far. I'm looking into it for that but have not found an accredited therapist that is close to where I live.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
— https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/