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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Mentor
John, Volunteer Mentor | @johnbishop | Jan 27, 2019
In reply to @adriennes "I have PTS, am female and have the rarer form where the medial, ulnar and radial..." + (show)
@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Jump to this post

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

REPLY
4 replies
painful | @painful | Jan 27, 2019
In reply to @johnbishop "Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain..." + (show)
@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

Jump to this post

I am in week 9. I am only not in pain when heavily medicated. The pain has been the same throughout.
I have never done this before but I hope for other suffers they are not alone.
I just don5 understand why I am not better yet. The weakness and muscle wastage I cam cope with

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 27, 2019
In reply to @adriennes "I have PTS, am female and have the rarer form where the medial, ulnar and radial..." + (show)
@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Jump to this post

Hi, @painful -- welcome to Mayo Clinic Connect. Glad you found us. In addition to the members here on this thread, also wanted you to meet @andylevine and @confused1955, who've also talked about Parsonage Turner Syndrome, as well as @rosemarya and @sandytoes.

You mentioned being in week 9. Is this the amount of time since your diagnosis?

REPLY
1 reply
andylevine | @andylevine | Jan 27, 2019
In reply to @johnbishop "Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain..." + (show)
@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

Jump to this post

Has the pain been continuous for 9 weeks? Have you been to a neurologists?

REPLY
painful | @painful | Jan 27, 2019
In reply to @johnbishop "Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain..." + (show)
@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

Jump to this post

Yes and yes

REPLY
painful | @painful | Jan 27, 2019
In reply to @lisalucier "Hi, @painful -- welcome to Mayo Clinic Connect. Glad you found us. In addition to the..." + (show)
@lisalucier

Hi, @painful -- welcome to Mayo Clinic Connect. Glad you found us. In addition to the members here on this thread, also wanted you to meet @andylevine and @confused1955, who've also talked about Parsonage Turner Syndrome, as well as @rosemarya and @sandytoes.

You mentioned being in week 9. Is this the amount of time since your diagnosis?

Jump to this post

6 weeks from diagnosis

REPLY
painful | @painful | Jan 27, 2019
In reply to @johnbishop "Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain..." + (show)
@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I'm hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for "parsonage turner syndrome" and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

Jump to this post

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.

REPLY
1 reply
andylevine | @andylevine | Jan 27, 2019
In reply to @adriennes "I have PTS, am female and have the rarer form where the medial, ulnar and radial..." + (show)
@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Jump to this post

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

REPLY
6 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 27, 2019
In reply to @andylevine "For what it is worth, my parsonage Turner was apparently directly related to something called a..." + (show)
@andylevine

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

Jump to this post

@andylevine, Thank you for your response to @painful.
And - I think your responses are worth a lot! When dealing with a rare condition, it is always comforting to hear from someone who has experience with the same thing.
Rosemary

REPLY
andylevine | @andylevine | Jan 27, 2019
In reply to @andylevine "For what it is worth, my parsonage Turner was apparently directly related to something called a..." + (show)
@andylevine

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

Jump to this post

Thanks very much. It's two years tobthebweek when I was going in for shoulder surgery to take care of this pain and Penn discovered instead that I needed a new aortic valve and had a thymoma. Big change of plans there!

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