Parsonage Turner Syndrome

Cubababy50
Cubababy50 Online Community Member Posts: 1 Listener
in Rare, invisible, and undiagnosed conditions
I first had PTS in 2010, it was the most pain that I have ever been in. I could not move my right arm at all while the nerves in my arm were dying off. The first thing that you notice is the muscle wasteage is right from day one, with the most excruciating pain i have ever had.The pain lasted for almost 3 weeks and i had to take the strongest pain killers that the hospital would prescribe.I got to 80% of my arm movement back and that is till this day.I had no indication of what was in store for me ,one day a sore arm the next no movement at all.Fast forward to 2019 it was in the July of that year and i started shaking for about 10 minutes and it stopped,I never thought anything of it because after the shaking nothing happened.I had a 5 day trip to Spain planned in the October on arrival at the Hotel the shaking come back and again nothing.It wasnt until the 4th night i started to feel pain in my arm as if i had pulled a muscle.When i got home the pain started to intensify and i went to hospital to get pain killers.The doctor must have thought that i was an addict,it was only when i asked her to look at my history and she gave me the strongest pain killers that was allowed and orimorph and sent me on my way.Within 24 hours i had lost the use of my left arm and the pain again was so intense.It has taken until September 2021 for me to regain about 70% of my arm movement back.Again the pain whilst the nerves were dying off lasted about 3 weeks before i came off medication.It is only sites like these that you have people with the same symptoms that you get to know whats wrong with you.In 2010 had to explain to one of europes top neurologist what the conditions were because he had never heared of it.I do hope this information was of some use to readers as it can be so frustrating trying to find answers off a doctor.

Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    Welcome to the community @Cubababy50 :) 

    Thank you for sharing your experience of Parsonage-Turner Syndrome. It's not a condition I'm familiar with, so it was interesting to read your story. I hope that other members will find it equally as enlightening!

     I was glad to read that you've managed to get a good percentage of your arm movement back. Do you feel like you're continuing to improve? 

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