1. < Brain & Nervous System

Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I'm still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

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Lisa Lucier | @lisalucier | Feb 18, 2019
In reply to @josebaltierraii "First and foremost, thank you to the Mayo Clinic for providing this service. I didn't think..." + (show)
@josebaltierraii

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!

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Hi, @josebaltierraii - welcome to Mayo Clinic Connect. A key intent with Mayo Clinic Connect is just as you said: to help members feel comforted knowing there are so many people out there who know just how you feel. Patients also "know things" from their journeys and are able to help out fellow patients with the same or similar condition a lot.

That is very unfortunate that the pain and spasming came back in a shooting, burning manner.

I think that some of the other members with PTS here in this discussion will have some thoughts on how they use gabapentin and whether they instinctively take it when having an episode. Please meet @tmachian @patrick17 @jjspokane61 @scout138 @confused1955.

Sounds like you are not wanting to go through the process of getting a referral and all that involves to get your latest symptoms treated. Have you thought about perhaps messaging your doctor through a secure portal or calling his or her office to speak to a nurse, @josebaltierraii, for what he or she would suggest for gabapentin use when you have an episode of your PTS?

@petemidd - how is your left arm doing? I believe that you were looking for input on how you could help your doctors recognise your condition because it doesn’t fit typical symptoms, and also get your strength back. I'm hoping some of the same members I tagged will have some insights for you. Just to confirm, @petemidd, do you have a confirmed diagnosis of Parsonage Turner, or are you strongly suspecting that you have it?

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andylevine | @andylevine | Feb 18, 2019
In reply to @patrick17 "That was very good advice you gave for anyone who has PTS. I will reach the..." + (show)
@patrick17

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!

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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.

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1 reply
confused1955 | @confused1955 | Feb 18, 2019
In reply to @andylevine "Have you had your thymus imaged. Strange as that sounds when the doctor discovered that I..." + (show)
@andylevine

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.

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Those of you on narcotics for pain how do you keep your bowels moving. I had to stop mine and am taking several types of laxatives but I've been 34 days without a bowel movement. If this new set of laxatives don't work by the end of March I have To go into long term care. My medical team have tried to keep me home but without my bowel working and my pain under control the team gave me 60 days I have 40 days left. Anyone out there find a laxative that actually works.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 18, 2019

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
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1 reply
confused1955 | @confused1955 | Feb 18, 2019
In reply to @johnbishop "Hi @confused1955, I'm not taking any narcotics but from time to time I have severe constipation..." + (show)
@johnbishop

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

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Have tried every over the counter med everyday for 6 years. Went off all stated lactalose a month ago still nothing. 2 weeks ago I started constella nothing. All I have is a leaky discharge with gas about once a week. Dr got involved 2 weeks ago but in the last two weeks I can hardly breath because stomach and chest is so distended. Will Be seeing Dr. Thursday afraid he and my medical team aren't going to wait until the end of March before they demand long term care.

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1 reply
richman54660 | @richman54660 | Feb 22, 2019
In reply to @painful "The pain has been continuous. The pain killers work for 6 hours. I had an MRI..." + (show)
@painful

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.

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@painful sorry to hear about PTS. Are you on something for nerve pain. I was on nortriptyline for a time and there are many others Drs. can prescribe? Also, I wonder if different supplements might help things like turmeric, quercetin / rutin, other lipoflavins, resveratrol and different combinations of supplements. You can buy these on Amazon or at a vitamin shop. I also take a little hemp seed oil (not CBD). I do think these made a difference for me somewhat in pain level for hip and back pain I have. Some might make pain worse, some better. It might help somewhat with nerve pain.

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elained | @elained | Feb 22, 2019

Parsonage-Turner Syndrome (PTS), also referred to as idiopathic brachial plexopathy or neuralgic amyotrophy, is a rare disorder consisting of a complex constellation of symptoms with abrupt onset of shoulder pain, usually unilaterally, followed by progressive neurologic deficits of motor weakness, dysesthesias, and numbness.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2926354/

Just for information.

Regards, ElaineD

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 6, 2019
In reply to @kimchi19 "My symptoms are possibly PTS. I had ACDF level 2 surgery Feb. 28th and 3 nerve..." + (show)
@kimchi19

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?

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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?

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1 reply
kimchi19 | @kimchi19 | Jun 6, 2019
In reply to @johnbishop "Hello @kimchi19, welcome to Connect. There is another discussion with the same name where your question..." + (show)
@johnbishop

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?

Jump to this post

Yes, I'm flying to Houston to see a neurologist who specializes in PTS to either confirm the diagnosis or rule it out.

REPLY
kimchi19 | @kimchi19 | Jun 6, 2019

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?

REPLY
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