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?

@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

Jump to this post

No I had been sewing by hand about 10 hours a day, while laying flat on my back. Eating and sleeping. No surgery, no shots no medication changes, nothing.

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@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

Jump to this post

Have any of you had your thymus imaged or examined? Very odd question to he sure. I had my PTS attack 4 years ago this month. It left my left arm with a 90% deficit. I regained about half over the next two years. Then it caused a tear in a tendon at the rotator cuff. The pre op ekg showed an anomaly, which led to an echocardiagram. That led to emergency heart surgery and which through an odd series of events led to a finding of type B2 Thymoma, an incredibly rare form of cancer (I was stage 2b). This was coincidentally removed during the heart surgery, which is an incredibly long way of explaining how my PTS was resolved. Thymoma can also be non malignant and is frequently associated with rare autoimmune disorders. My oncologist thinks the early stages of the thymoma may have been associated with the PTS. Both conditions are so rare there are no studies. But I thought I’d at least put it out there.

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@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

Jump to this post

Thankyou, my dr’s don’t know much at all, my neurologist has only seen this one other time. Would that have been seen on a brachial plexus MRI? I’ve had a chest ct also, I will ask my primary , I had abdominal surgery so that’s where they think the PTS came from, but I’ll check that out. Hope you are doing ok.

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@confused1955

Yes I have not been hospitalized. The neurologists were unable to explain the disease to me. Of course my family Dr told me to Google it. The neurologists told me it was untreatable and all they can do is medicinally keep me comfortable but I am unable to afford Lyrica and I am unable to take anti inflammatorit’s because it makes the swelling worse. That’s all I was offered. To say the least I’m a mess and the more stress I have the more pain I have.

Jump to this post

I found positioning and heat helpful. I still have to sleep sitting up a year later. Ice and heat help.so sorry you have this, hang in there, it very slowly improves

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@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

Jump to this post

I appreciate your input. I’m going to start making a big file for my Dr.

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If my hands get the least bit cold the joints ache so bad. If my hands get warm they feel like they have been scalded with boiling oil.

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I’m a bit confused as to why you cannot get another opinion. I am not a doctor, but I have been through enough with PTS to at least appreciate there is a range of symptoms. Yours seems well outside the range of anything that any of the neurologists ever discussed.

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@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
@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

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@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
@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
@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
@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
@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.

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@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.

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