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Hello, I just found this site and thought I might join in. In 1992 I was at Mayo Clinic in Minn and diagnosed with Atypical bilateral brachial plexus neuritis, involving C6 thru C11. A few years ago I learned it is now called Parsonage Turner Syndrome. My attack was quite severe involving both shoulders within an hour. I had attacks nightly for about 6 days until University Hospital Utah stopped them with prednisone. 5 months later I was seen by Mayo Clinic Minn. 29 years of fighting pain.

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Replies to "Hello, I just found this site and thought I might join in. In 1992 I was..."

Hello @sonnys and welcome to Mayo Clinic Connect. Thank you for joining the discussion and Connect. You said you have had 29 years of fighting pain. Are you using, or had you been using, Oxycodone and/or Oxycotin to deal with your pain?

Hello, @sonnys , I’m so sorry that you have been dealing with the effects of Parsonage Turner Syndrome (PTS) for 29 years. I can certainly sympathize with you. I was diagnosed with atypical PTS a little over 4 years ago. It affects my right arm and both hands. The pain in my right hand is much worse than in my left hand.
I wear compression gloves and take pregabalin (Lyrica) to help relieve the pain. They both help some, but I still am left with a lot of pain.

I’m glad you found this group. There is also a Parsonage Turner Group on Facebook in which you might be interested. I joined Facebook just so I could join this group. It has been very informative and helpful to read about others who also have this condition.

Please feel free to reach out to me if you have any questions or comments. I hope you will find some relief to your pain.