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I Have Parsonage Turner Syndrome

Is This What My Life Will Be Like From Now On?

By: Lecgerken
Written on September 19th, 2012
Over a year ago I woke up felling sick with a fever and horrible pain and weakness in my arm. I couldn't open doors, pick up milk, open a bottle of water-I am sure you get the drift. At night I couldn't have my husband lay near me-any sensation of touching of my arm felt like stabbing knives. I was given ever med under the sun, drs thought it was the herniated disc on my alternate side aggrivating me until my neurologist (I suffer from migraines) conducted an EMG and examined me. He feels I have PTS. After a year of a cocktail of meds, cortisone injections, PT and chiropractic treatments it has been under control-until this week when I developed a cold. Has anyone experienced this? My are is week and I have shooting pain-although not as bad, thanks to the drug cocktail I am sure, but, I defiantly notice a significant weakness and change.

Any thoughts are appreciated!
By: Lecgerken
Age: 31-35
466 people have read this story

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  • rbwalton
    rbwalton

    A lot of how things depend on what caused your PTS. If it was just a onetime fluke, eventually things may return to what approaches normal. The general thought about recovery has been that the more pain you have in an attack, the more weakness and lack of function you will experience. In general, you will recover function that you have now lost. But, recovery may not be back to 100% of previous levels. And this is a vast generalization because no two sufferers will have exactly the same response to any particular PTS attack.

    What gets harder to deal with is if you have the type of PTS that either has a prolonged attack, or multiple attacks that seem to hit every say 5-7 years or so. If this is what you have, then that partial recovery will happen and be followed by a further attack that will also have a not quite complete recovery, etc. This is the rarer outcome, but it does happen. That is what I am dealing with. My first known attack was in 2001 or so, and it was followed by a new attack in 2006. I have learned ways around some obstacles. Some function has returned, but weakness is a constant thing for me at this point. So, for me and my case, this is now how it will be for me. It may be different in your case. Do not give up hope for that.

    The good news is that the pain can be managed eventually, even though it seems presently that it is the only thing you know and can count on. The pain eventually goes away. You will either get return of function, or learn ways to cope by using different muscles to do things you can’t do now.

    Do not push the recovery too quickly. It takes time for damaged nerves to recover sufficiently to be able to power those muscles again.

    Sep 19, 2012
    1 like