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?

@patrick17

Hello @jjspokane61, I do have limited range of motion with my right arm. Weakness, also. I can’t raise it above my shoulder. My thumb doesn’t bend at all and my index finger only bends a little with great effort. My middle finger is about 90%.
My orthopedic surgeon was so alarmed at the deterioration of my hand and arm he said that I needed surgery right away. I guess he never considered PTS. I wish I had been referred to a neurologist first. However, even my first neurologist didn’t consider PTS.

I have had EMG tests performed by three different doctors. My first neurologist, who was highly recommended, literally had me jumping off the table. After he jolted me one final time with the worst jolt of all, he said, “Let’s stop here.” He said that I was overly sensitive to the test. My fault, I guess. A month later I had another more thorough EMG test by another neurologist and I barely had any discomfort at all. It definitely makes a difference how skilled the doctor is who performs the test.

I’m going to try acupuncture and cupping as suggested by one writer. Sooner or later I will find something that helps. I just can’t go on with this pain. It is very wearing. I’m glad your pain is controlled by the gabapentin.

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Did you end up having hand surgery? When I told my neurologist that the hand dr wanted to do a tendon release he just nodded his head NO… I have been going for hand therapy to try and regain movement in index finger. Very painful process but I have seen some improvement. I did get my 2nd nerve conduction study done today – and it came back positive for nerve damage. Dr says that means I definitely have brachial neuropathy (PTS). Said I needed to be patient and it would get better with time…

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@patrick17 – EMG was just great… he decided to test both my bad and good arm so he could compare. Just grin and bear it that's my only advice. I double checked with him about the spinal injection… he said if the first one helped I should definitely do the 2nd one. That comes up on Sept 11th… 1st shot took 3 weeks to make a difference… would mean some more relief about the end of September if it helps again.. Something to hold out hope for! The real moral of the story for me is this… If you THINK you are having nerve pain you should just go straight to the neurologist. Don't bother going to your GP and getting the run around that will take months while you suffer. Dr told me today that if I had gotten in there sooner they could've put me on steroids (IV steroids) that would've minimized the nerve damage. If there's a next time with this pain, I will drive straight to his office and cry in his waiting room until he see me! My Dr is a MS specialist too… he told me today I still need the brain MRI… hoping to get that done next week or two. Cheers!!

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@jjspokane61

Did you end up having hand surgery? When I told my neurologist that the hand dr wanted to do a tendon release he just nodded his head NO… I have been going for hand therapy to try and regain movement in index finger. Very painful process but I have seen some improvement. I did get my 2nd nerve conduction study done today – and it came back positive for nerve damage. Dr says that means I definitely have brachial neuropathy (PTS). Said I needed to be patient and it would get better with time…

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jjspokane61, no I didn’t have hand surgery. The orthopedic surgeon performed anterior cervical discectomy and fusion surgery (ACDF, for short) at C6/C7 because that’s where the MRI showed there might be a problem. Unfortunately, the surgery didn’t help. All it did was to cause similar nerve pain in my left hand as I had in my right hand. I wish I had gone to a neurologist for a second opinion. Oh, well…

After my surgery I saw a neurologist who ordered some tests for me (MRI of the brain and a lumbar puncture) and also referred me to a hand surgeon. The hand surgeon, who is top notch, realized I had bigger issues than just my hand and referred me to another neurologist. He actually called the neurologist right then and the next day I received a call from the neurologist’s office. I will always be grateful to the doctor for this referral. He could have just sent me on my way telling me that he couldn’t help me.

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@jjspokane61

@patrick17 – EMG was just great… he decided to test both my bad and good arm so he could compare. Just grin and bear it that's my only advice. I double checked with him about the spinal injection… he said if the first one helped I should definitely do the 2nd one. That comes up on Sept 11th… 1st shot took 3 weeks to make a difference… would mean some more relief about the end of September if it helps again.. Something to hold out hope for! The real moral of the story for me is this… If you THINK you are having nerve pain you should just go straight to the neurologist. Don't bother going to your GP and getting the run around that will take months while you suffer. Dr told me today that if I had gotten in there sooner they could've put me on steroids (IV steroids) that would've minimized the nerve damage. If there's a next time with this pain, I will drive straight to his office and cry in his waiting room until he see me! My Dr is a MS specialist too… he told me today I still need the brain MRI… hoping to get that done next week or two. Cheers!!

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jjspokane61, that’s very good advice about seeing a neurologist right away. Shortly after my neck and shoulder pain went away I developed nerve pain in my right forearm. I remember telling the physical therapist about it. I should have asked my primary care doctor to refer me to a neurologist. Unfortunately, it was another 3 months before I saw a neurologist. By then my hand and arm pain had really set in.

I just made an appointment with a neurologist at a university hospital about an hour away. The earliest appointment is in the middle of March 2019! Wow! Maybe I’ll take your lead and go to his office and cry until he sees me. I made the appointment, but I may try other places such as the Mayo or Cleveland Clinics. Hopefully, their appointments aren’t that far into the future. Good luck with your upcoming procedures!

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@patrick17 March 2019 is ridiculous! Sorry to hear that… maybe just keep calling to see about cancellations? Sometimes they keep a cancellation list. It's very interesting to me that you and I have almost the exact story about PTS (except I haven't had any leg involvement). Even the story you told about your dr calling the neurologist during your appointment – mine did the same – he's the one who saved me from having the unneeded spine surgery you had to suffer through! Sadly it still took a month to get in to see the next dr – but that's still way better than the 6+ month wait you're looking at! I will be getting a 2nd spinal injection next week – my neurologist said since the first was apparently helpful it wouldn't hurt to do the 2nd. I'll keep you posted on that. I know you are trying to avoid meds… but are you still on gabapentin or something like that? I'm still taking daily and if I let it slip even a little I pay with extreme pain. Still waiting for the brain MRI to get scheduled. I'm not TOO worried about it… but now every little symptom seems scary… (I'm a little dizzy, my vision is blurry sometimes) Still probably nothing, but will be happy to get the scan and know it's clean!

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@dingdarling We haven't heard from you in a long time… does that mean you're better? Hope so! I was reading one of your older posts about being frustrated about not being able to do things that are simple for everyone else – I can so relate! I can't use my dominant hand – all those hobbies and past times of mine that use my hand are now impossible to do! I'm a couple years from retirement – what will that look like if I don't get the use of my hand and arm back? I can tell you that this has been a VERY emotional time for me – and I'm guessing for you too. Would love to hear an update!!

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@adriennes

This doesn’t really help, Thankyou though, my PTS isn’t following the norm this is why I’m looking for anyone else ,

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I wanted to get on to help. I am an RN and my husband has Parsonage Turner Syndrome. He was diagnosed at Mayo 20+ years ago. It affected his brachial plexis nerve. He recovered about 90%. However the right side of his diaphragm doesn't expand well. His right arm which was completely atrophied recovered. We've been married 14 years, so I didn't experience this with him at the time but noticed the residual. A couple months ago, in May he was hopitalized because he quit breathing. The Doctors ran so many tests and the only diagnosis they could come up with was hypoxia. What they missed was he had a virus which he almost died from which in turn set off his Parsonage Turner Syndrome. All the pain in his right arm, across his abdomen and in his lower back were results of this. It didnt occur to me at first but I specialize in pain management and this was nerve pain. I contacted his doctor to start Neurontin (Gabapentin) right away. It works miracles. His pain is under control and he continues to try and use his right arm so it won't become flaccid. What is sad reading, is that doctors are using narcotics and and not medd for nerve pain. Neurontin, lyrica, antidepressants work for nerve pain. Put your doctors on the right track so you can get relief

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@mydolly

I wanted to get on to help. I am an RN and my husband has Parsonage Turner Syndrome. He was diagnosed at Mayo 20+ years ago. It affected his brachial plexis nerve. He recovered about 90%. However the right side of his diaphragm doesn't expand well. His right arm which was completely atrophied recovered. We've been married 14 years, so I didn't experience this with him at the time but noticed the residual. A couple months ago, in May he was hopitalized because he quit breathing. The Doctors ran so many tests and the only diagnosis they could come up with was hypoxia. What they missed was he had a virus which he almost died from which in turn set off his Parsonage Turner Syndrome. All the pain in his right arm, across his abdomen and in his lower back were results of this. It didnt occur to me at first but I specialize in pain management and this was nerve pain. I contacted his doctor to start Neurontin (Gabapentin) right away. It works miracles. His pain is under control and he continues to try and use his right arm so it won't become flaccid. What is sad reading, is that doctors are using narcotics and and not medd for nerve pain. Neurontin, lyrica, antidepressants work for nerve pain. Put your doctors on the right track so you can get relief

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Hello @mydolly, welcome to Connect. Thank you for sharing what has helped your husband and how important it is to be your own advocate and work with your doctors on a treatment plan. Sometimes narcotics and non conventional treatments are the only thing that works for nerve pain which is probably one of the reasons we have a opioid crisis in this country.

I have no medical training or background but have done a lot research on pain drugs and when they work, they are great for the patient. Unfortunately prolonged use with higher and higher doses to deal with the nerve pain has a lot of bad side effects, including brain fog. I'm fortunate because the nerve pain drugs do nothing for my small fiber peripheral neuropathy because I only have the numbness and tingling for symptoms and not the awful pain. Not that numbness is good ☺ My hope is something that addresses the cause of nerve pain, damaged/dead nerves which the gabapentin, Lyrica and other pain meds do not address. The meds just focus on blocking the pain signals in the brain and not fixing or repairing the nerves. I think the real hope is in stem cell treatment if and when they can figure out how to make it work for the nerve cells. Until then, like you mentioned, we need to work with our doctors to get the needed relief.

John

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@johnbishop

Hello @mydolly, welcome to Connect. Thank you for sharing what has helped your husband and how important it is to be your own advocate and work with your doctors on a treatment plan. Sometimes narcotics and non conventional treatments are the only thing that works for nerve pain which is probably one of the reasons we have a opioid crisis in this country.

I have no medical training or background but have done a lot research on pain drugs and when they work, they are great for the patient. Unfortunately prolonged use with higher and higher doses to deal with the nerve pain has a lot of bad side effects, including brain fog. I'm fortunate because the nerve pain drugs do nothing for my small fiber peripheral neuropathy because I only have the numbness and tingling for symptoms and not the awful pain. Not that numbness is good ☺ My hope is something that addresses the cause of nerve pain, damaged/dead nerves which the gabapentin, Lyrica and other pain meds do not address. The meds just focus on blocking the pain signals in the brain and not fixing or repairing the nerves. I think the real hope is in stem cell treatment if and when they can figure out how to make it work for the nerve cells. Until then, like you mentioned, we need to work with our doctors to get the needed relief.

John

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Hi John,
You are right in the fact that dead nerves can not seek any benefit from medication. I'm speaking for those who experience nerve pain (burning, sharp shooting, tingling, numbness) so they can find relief. Most doctors do not specify nerve pain and get people on the right medications. Neuropathic pain can be controlled and patients can have relief. The more we teach each other, the more people can take control of their pain issues in the correct fadhion. I hope you can find relief for your discomfort which I know is annoying. You are blessed that it is no longer hurting.

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@mydolly

Hi John,
You are right in the fact that dead nerves can not seek any benefit from medication. I'm speaking for those who experience nerve pain (burning, sharp shooting, tingling, numbness) so they can find relief. Most doctors do not specify nerve pain and get people on the right medications. Neuropathic pain can be controlled and patients can have relief. The more we teach each other, the more people can take control of their pain issues in the correct fadhion. I hope you can find relief for your discomfort which I know is annoying. You are blessed that it is no longer hurting.

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The only medicine that did help me with my Nerve pain and the Burning stabbing and all that goes with that was gabapentin I have tried so many over the years Lyrical also work but Gabapentin was much cheaper and my Spinal stimulator helps alot. But nothing will Totally take all the pain away all I do is pray that it helps me get through the day..

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@chriso12345

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

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Hello @chriso12345, welcome to Mayo Clinic Connect. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @lisalucier to see if she can move your post to the following discussion:

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

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@chriso12345 have you found anything that helps a little?

John

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Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

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@johnbishop

Hello @chriso12345, welcome to Mayo Clinic Connect. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @lisalucier to see if she can move your post to the following discussion:

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

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@chriso12345 have you found anything that helps a little?

John

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@johnbishop the doctor prescribed Gabapentin which I didn’t want to take at first. Now, I am because I work full time and need something to be able to continue working.

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@chriso12345

@johnbishop the doctor prescribed Gabapentin which I didn’t want to take at first. Now, I am because I work full time and need something to be able to continue working.

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Hi, @chriso12345 – As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

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@lisalucier

Hi, @chriso12345 – As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

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I have to say it but my pain lasted only 1 week. But it was so intense I had to be in a morphine drip. Lyrica worked a bit as well. It is nerve pain so opiates can only knock you out. Neurotin and Lyrica may be your best bet. I can't comment on coping it other alternative treatments.

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