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I Have Parsonage Turner Syndrome

Pts

By: anseimotrp
Written on October 28th, 2009
Age: 31-35
2,632 people have read this story

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9 responses
  • PDG1

    Thanks so much for sharing your story. It has given me hope that it is possible to resume a pain free and active life after experiencing the debilitating pain and physical restrictions that come with having PTS. You have given me hope and for that I am greatly appreciative!

    Apr 5
    1 like
  • jb2sgirl

    Thankyou. I've been suffering 7 months and my right shoulder is still winged out and has caused my rotary cuff muscles to be so sore (tendonitis) which is hard to heal with a new baby. I too got a tetanus shot when my baby was born and 2 months later this happened :(

    Oct 14, 2012
    1 like
  • sccadsr31

    I am a 65 year old male and contracted PTS in my right shoulder Oct 2008 and in left in Aug 2010, my recover has not been nearly as successful as yours. I'm being treated at Stanford and they have no protocol for exercise or physical therapy and feel it could damage the nerves.

    My right showed improvement in about 18 months, the left is now 2 years and not doing well. My right range of motion is about 60% of pre PTS and my strength is significantly less.

    When the PTS showed up in the left arm Stanford put me through a full range of tests because they said have PTS bilateral was unheard of and they through it had to be something else and they eventually proved it was PTS..

    This is a life altering problem.

    Aug 5, 2012
    1 like
  • rbwalton

    Just wanted to add a note that Parsonage-Turner Syndrome (PTS) is not the same thing as Turner Syndrome.

    Mar 6, 2011
    1 like
  • alishalopej

    Interesting article and thanks for sharing this useful matter with everyone. The symptoms of Turner syndrome vary depending on the age of the girl or woman affected. Lymphoedema is a problem that sometimes develops in unborn females with Turner syndrome. It occurs when fluid cannot be properly transported around the organs and body. Swelling is caused by any excess fluid that leaks into the surrounding tissues. The symptoms are thick neck tissue, swelling of the neck and being a small baby.

    http://www.disorderscentral.com/

    Nov 12, 2010
    1 like
  • anseimotrp

    I'm extremely thankful for being able to inspire you through my story and share information that might be useful to you. This, in turn, also keeps me strong with this unfortunate battle, mentally and physically, with PTS. From my experience with PTS, I had winging of the scapula for quite a while. That later strengthened with time and physical therapy. My Dr. also said the same thing as far as getting it from a virus. Still unsure though. I like your sugesstion about blood samples and I agree. I think another possibility of contracting PTS, based on my own 2 experiences and many others I read, could be overuse of the muscles.

    Jan 19, 2010
    1 like
  • geogal

    Wow! Thank you so much for your inspirational story.



    Most information I have read and neurologists I have talked to say that recurrence is very very unlikely... but at least several people on here have shared stories about PTS coming back. I like that you shared a story about it at least going away! I am 8 mos. past diagnosis... minimal pain but still have a winging scapula. I wonder what factors we may all have in common that have not been obvious to doctors before... if it really comes from a virus, as it was suggested to me- I wonder if the virus reactivates when PTS recurs? Maybe it would be interesting to look at all of our blood samples under a microscope and see how they compare- especially at onset or recurrence.

    Jan 12, 2010
    1 like
  • anseimotrp

    Thank you for the comment and just be patient. Best of luck to you. It concerns me that you have had pain for this long. A little achiness here and there maybe but not the same pain as you have when you first get it.

    Dec 5, 2009
    1 like
  • NurseLeah

    Thanks so much for sharing your story. It helps to hear a success story. I am 1.5 years out from onset of pain and feel like I'm getting worse. Maybe there can be hope for me too! Maybe in another 6 months, I'll be better- I keep reading about the 2 year mark.

    Dec 3, 2009
    1 like