Parsonage turner syndrome *

Hi @kel2, @becsbuddy gave you some good resources to get started on finding a Parsonage Turner Syndrome specialist. I moved your message to this existing discussion group:
- Parsonage turner syndrome * https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I did this so you can more easily connect with fellow PTS members like @macker4635 @stacy88 @jjspokane61 @patrick17 @andylevine @kgoodwin9 @jjspokane61 @macker4635 @smf @scionmissy, share experiences and get tips on finding a good specialist.

Hello, How are you doing? I too have PTS. My first symptom was intermittent pain/sensitivity to the tip of my index finger. Eventually I loss function of the upper part of fingertip for several months. Prior to losing function I experienced intermittent spasmodic pain to upper arm and intermittent pain near scapula. My EMG and conduction studies were negative. My MRI of cervical neck shows stenosis but well respected neurosurgeon said I don't need surgery at this time. I also have osteoarthritis in both thumbs and will have surgery for that soon. I get occasional spasms in index finger with pain along tendon up into forearm after these. This all started about 4 years ago.

I’m 65 WM right-handed. Looking back my PTS started on Jun 7th of 2023, pain in neck at 5pm, left scapula at 9pm and moved to left elbow by 12am. I had two recent surgeries with a lot of mental and physical stress. Through the spring I had very mild sore throat/congestion. On 6/13 I had trouble drinking with my left hand, clumsy. 6/18 numbness in left thumb and pins and needles on back of left hand. 6/19 much worse, wrist limp. June 30th had EMG and I was misdiagnosed with radial nerve palsy, aka Saturday Night Palsy. 8/6 pushed off with left arm and had shooting pain, then left thumb went numb. 8/29 EMG diagnosed with PTS. 9/9 After working hard in the yard I did have a mild momentary nerve pain shoot down my left leg when I stood up and multiple times since but much milder. 9/18 started Gluten Free, Alcohol Free, Dairy Free diet as PTS has an autoimmune component. Your comments are welcomed.

Yes I’ve still got numbness in right hand little finger and next finger after 7 mths
Started with shoulders(both) being painfull overnight around 5 days after right hip replacement. Moreso on the right shoulder
Lasted for about 2-3 mths
Still can’t lift right arm to full extent after 7 mths

Have you had any improvement? After 4 months I have some improvement in my shoulder and only slight improvement in my hand.

That was my 7 month update
Little finger and half of the ring finger still numb
Left shoulder 90%good
Right shoulder 70%
Now having left hip replaced end November
Hope i dont get it twice

What happens when Parsonage Turner syndrome isn’t treated? I’ve had symptoms for almost 7 months and I literally feel like I’m shutting down. The pain is so intense, I can barely sleep and when I wake up my arms don’t work at first. I’ve been to numerous doctors and emergency rooms and sent home w no answers.

Hello everyone. . I kept going to my orthopedic and my neurosurgeon telling them something was very what I found it’s good into the wrong, pain issues in both shoulders and severe pain in my neck , finally on May 10th pain when I turned my head in the car my pain became excruciating , way over at 10 . By that night I couldn’t lift my arm and called an ambulance. I did have an infraspinatus tear that I was going to have repaired in June. my orthopedic did an emergency revision reverse shoulder the following Monday morning I kept telling them this was nerve pain and no one seemed to be listening. I finally suggested that my primary order a brachial plexus MRI and it showed brachial plexus neuritis, I also had an EMG which showed an issue with the C5 nerve . I went to a different neuro surgeon who’s actually from Jon Hopkins , she’s telling me she’s never seen this improve. However, my neurologist is saying in time it will get better. For me the main issue in my bicep I can only raise my arm to my mouth area.. I also cannot raise my hand or arm out to the side. . I have been told by a hand surgeon that I should go to the Mayo Clinic to be evaluated before much more time goes by. However, traveling for me would be very difficult at this point because of spine issues. I am considering the Cleveland clinic in Weston Florida, which is fairly close. I live in Naples Florida and no one seems to be that knowledgeable about this. Has anyone had something similar to what I am experiencing and what has your experience been? Thank you so much advance.. Leigh

I was just reading your post after posting for the first time last night. Your comment makes me believe that you are seeing an immunologist. .It’s interesting different doctor tell you different things , the neurosurgeon and I saw told me it is not auto immune. And my neurologist told me that it could be , after reading last night on this sight and seeing your post I agree with you that it appears it is …I have auto immune issues so I will ask my immunologist about this in my case next month. I had carpal tunnel surgery in October and noticed changes in the dexterity of my hands several months later and elbow pain. Thank you for your post. I hope that you are feeling somewhat better. By the time you read this and I’ve seen some improvements..