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Parsonage turner syndrome *

Brain & Nervous System | Last Active: Oct 25, 2023 | Replies (237)
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@stacy88

Thank you for replying @becsbuddy any info would be a big help as we don’t know very much about it at all my partner in under a neurologist but so far the only treatment he has had is medication ie Pregabalin which helped at first when the pain first started but dont really help with the numbness/tingling

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Replies to "Thank you for replying @becsbuddy any info would be a big help as we don’t know..."
Colleen Young, Connect Director | @colleenyoung | Jul 1, 2021

Hi Stacy, I add my welcome. As @becsbuddy has suggested, I moved your post to this active discussion about Parsonage-Turner syndrome (PTS) so you can connect with other members like @patrick17 @andylevine @kgoodwin9 @jjspokane61 @macker4635 @smf and more.

You may also find these related discussions useful:
- PTS & Trigeminal Neuralgia - What do my symptoms add up to? by @macker4635 https://connect.mayoclinic.org/discussion/new-to-autoimmune-what-do-my-symptoms-add-up-to/
- Shoulder/arm pain related to Parsonage Turner Syndrome by @nychole3080 https://connect.mayoclinic.org/discussion/shoulderarm-pain-help/

According to this article,
"There is no specific treatment for PTS. Treatment is directed toward the specific symptoms that are apparent in each individual. Treatment may require the coordinated efforts of a team of specialists. Orthopedic surgeons, neurologists, neuromuscular disease specialists, pediatricians or general internists, and other healthcare professionals may need to systematically and comprehensively plan an affect individual’s treatment." https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/

Is it possible to get a second opinion at a large medical center, like Mayo Clinic, where your partner would have access to a team of specialists?

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patrick17 | @patrick17 | Jul 1, 2021

Hi, @stacy88 , I’m so sorry that your partner has Parsonage Turner Syndrome. I, too, have had this since 2017 and have similar symptoms to his. I have constant pain and tingling in both hands and in my right forearm. I have very limited use of my right hand. I’ve learned to write using my left hand which isn’t affected as much. The main thing that helps the pain in my hands is wearing compression gloves. I also take pregabalin, but the only way I know it is helping is that my pain gets worse when I have stopped taking it. In other words, my pain is still quite bad (7-8) even with the pregabalin.

I would recommend that your partner see a pain management doctor if he is not seeing one. I also recommend joining the Parsonage Turner Facebook group. There’s over 1500 people in the group and a lot of useful information.

I hope your partner finds some relief from his pain and gets the help he needs.

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