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Feb 18, 2019 · Parsonage turner syndrome * in Brain & Nervous System

First and foremost, thank you to the Mayo Clinic for providing this service. I didn't think to look up support groups when I was first diagnosed with PTS and now I feel comforted knowing there's so many people out there who know just how I feel.

Here's my story…. I was 33 years old in October 2017 when my symptoms started, which were only present in my left arm. It took three months of unbearable pain and a nerve test before my doctor realized what was going on. One of my symptoms was a numbing feeling in my left index finger, which to this day, still has that numb feeling; I never regained that "normal" feeling I have in my other fingers. Unfortunately, the doctor was unable to figure out what triggered PTS, however I have a family history of Lupus and speculate that may be the reason. I have been tested for Lupus, but the test has always come back negative.

After a month and half of physical therapy combined with 3 daily doses of Gabapentin, the pain gradually went away in February/March 2018. I thought I was cured of this terrible condition and it would never surface again. Then this past weekend happened. On Saturday, my left tricep would not stop spasming all day, just like it did when I had the first onset of PTS, however there was no pain. I thought it was rather strange, but thought nothing of it. Then on Sunday, I was at work, sitting at my desk when all of a sudden I felt that all familiar pain we all know so well, shoot through my arm and into my elbow. Then came that wonderful burning feeling returning to my tricep (whatever is left of it, since the muscle really wasted away the first time around). I left work, came home and took a nap, woke up 3 hours later and the pain was gone. Today, the symptoms have returned, but the pain is not as intense as yesterday morning.

The most I will take for pain is ibuprofen, I choose not to medicate with opiates despite my doctor's suggestion. The question I have for all of you is, do you instinctively take Gabapentin when having an episode. I have a bunch of it left over, it hasn't expired yet. I really want to avoid having to go to my primary doctor in order to get a referral to see a specialist again so I can treat my latest symptoms. Any information and advice you can provide is greatly appreciated.

Thanks! and to those in pain right now, I hope y'all feel better!