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Brain & Nervous System | Last Active: Oct 25, 2023 | Replies (237)
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I was diagnosed with Parsonage Turner Syndrome December 2005. My neurologist informed me that in most cases it will go away within a year or 18 months. He said that if lasted longer than that I would probably have it for life. This is a pretty cruel sentence. I have suffered with the pain that everyone else has described for the past 13 years. It has had a huge effect on my life style because when you are having a pain day, you just do not function. I will have some very good days and then for some reason I get a flare up and I cannot get any relief. I find that sitting up right with my affect arm folded over my chest and my opposite hand supporting the elbow is my relief.
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Dt0958, thanks for sharing your story. I’m sorry you have suffered from the pain of PTS for so many years. You are right; it is a very cruel sentence. I hope you find something that will lessen your pain and get you back to enjoying life again. I’ve just reached the 18 month mark. I have 7-8 level pain in my right arm from my elbow to my finger tips. Recently, I’ve had some relief for a few hours when the pain decreases to about a 5. That’s so nice! The fog I sometimes feel from the pain meds is almost as bad as the pain itself. I’m always looking for answers to this condition. I tried acupuncture for 5 sessions. That seemed to worsen the pain, especially one time when she added electrical stimulation to one finger. I am also having cupping done. I’m not sure if that was the reason for a lessening in my severity of pain. I’ll probably try it a few more times. Fortunately, the cost is reasonable where I go.
Next year I will probably switch from a Medicare Advantage plan to Medicare. It’s been great having $0 premiums, but being restricted to certain doctors isn’t good when you have a rare medical condition.