Parsonage turner syndrome *

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!

That was very good advice you gave for anyone who has PTS. I will reach the two year mark this week. Unfortunately, there has been very little let up in pain or use of my hand and arm. I have gone for occupational therapy several times, but it really hasn’t helped much. I also do range of motion exercises. One way to remember doing them which has worked for me is that I do them each time I take a pain pill which is 4 times a day. Even at 3 in the morning!
I also agree with having a great pain management doctor. They have helped much more than my neurologist. My experience was after performing an EMG test and reaching a diagnosis of PTS, follow up visits to my neurologist only resulted in offering different pain meds none of which worked for me. Pain management doctors offered other alternatives.

I hope and pray that your son does not have PTS. Thanks again for your post. It should be required reading for everyone who has PTS!

Have you had your thymus imaged. Strange as that sounds when the doctor discovered that I had a thymoma and it was removed my
Pts resolved. Thymoma is often related to autoimmune issues, though there are no studies with respect to pts.

Hi @confused1955, I'm not taking any narcotics but from time to time I have severe constipation and use Metamucil which contains psyllium fibre. I mix a a couple of teaspoons in an 8 oz glass of water and drink it in the morning. It usually helps me go within the day. More info about it here:
https://chealth.canoe.com/drug/getdrug/metamucil

The pain has been continuous. The pain killers work for 6 hours. I had an MRI and a visit to the Neorlogistat Wellingtons
. They want me back in three month. I am under the care of Andrew Wallace of the Fotrtius clinic in London
He operated on the same shoulder last Feb. Until I went to see him that is what I thought I had. He is top of his field.
He diagnosed me very quickly.
He looks at 2,000 shoulders a year and would see two at most in a year.

My symptoms are possibly PTS. I had ACDF level 2 surgery Feb. 28th and 3 nerve conduction studies by 3 different neurologists. My left thumb lost all flexion ability 1 month prior to surgery and remains unchanged. My right thumb is weak but still functional. Told to wait 2 years and it may go away. Does anyone have any experience with this disorder?

Hello @kimchi19, welcome to Connect. There is another discussion with the same name where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Brain & Nervous System > Parsonage turner syndrome *
-- https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I'm sure it must be difficult to be told to wait 2 years to see if a symptom will go away. Have you thought about getting a second opinion?