Connect
← Return to Parsonage turner syndrome *
Discussion
Comment receiving replies
Hello @adriennes, welcome to Mayo Connect. I am glad you found us. Connect is a good place to share your health story, ask questions and find out what others with similar health concerns are doing for treatments. 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
I am tagging another Connect member @andylevine who has talked about having Parsonage Turner Syndrome to see if they have any more information. Here is a link to the discussion - https://connect.mayoclinic.org/comment/51881/bookmark/?ajax_hook=action&_wpnonce=4e83f240d9
John
Replies to "Hello @adriennes, welcome to Mayo Connect. I am glad you found us. Connect is a good..."
Sounds like the length of your attack was long. But the lingering pain, numbness and for me extreme weakness in the impacted area is the norm. Mine seemed to have its genesis in defective t-cells produced by a malignant Thymoma. See if they will image your thymus, which is simple matter, to rule that out. Otherwise PTS is a waiting game and exercising helped me a lot.
Thank you so much for the info, I have been doing pilates all along, stepping it up as tolerable, the atrophy in my arm and hand is scary, my neurologist says I'm at a plateau with muscle gain, been the same for 3 months but I compensate so i thought it was better. I will speak to my doc about the scan, so scary for you, I pray you are well.
Connect
This doesn't really help, Thankyou though, my PTS isn't following the norm this is why I'm looking for anyone else ,