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adriennes
@adriennes

Posts: 21
Joined: Sep 10, 2017

Parsonage turner syndrome

Posted by @adriennes, Dec 20, 2017

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

REPLY

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

@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

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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

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?

@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

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

@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

@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

@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.

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.

@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.

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@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

@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!

@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.

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Merry Christmas

@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.

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@dear painful. i am here to let you know that others such as myself do care for you and your suffering. it was not to long ago i lay on the couch or in the bed suffering with my swollen knee, foot, etc and nothing really stopped the pain. it took more than six months and then another area of the body took over. two years of psoriatic and rheumatoid arthritis took over taking turns with my body. we do understand your suffering and wish we could help in some way. i leave it up to the others who have experience with your health problems. have a good holidays.

@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.

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i would like to add that you must be careful even with advil or tylenol. they do affect the kidneys, liver and etc. when the pain goes on for a long time the pain pills take their toll. peach over and out.

@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

Thank you

Greetings to you all!
I was just diagnosed with PTS this morning. Have been reading nearly everything I can find on the topic and came across this group. At least I have an answer for the pain. Was mis-diagnosed by my Primary Care doc and by an ER doc when the pain became so extreme, I gave in and went to a local ER to get some answers, or so I thought.

My Ortho doc who did my Rotator cuff surgery on the same shoulder 3 years ago, gave me his diagnosis this morning. He placed me on Gabapentin & a Methylpredisolone dose pack. Hopefully these will begin to ease the nerves. Wondering what others take to help them sleep at night?

Glad there's a group like this who understands. Thanks for the add!

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