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?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

confused1955 | @confused1955 | Jul 31, 2018
In reply to @painful "I feel for anyone going through this pain. This is the only time I have ever..." + (show)
@painful

I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

Jump to this post

Thank you so much. I never thought of acupuncture.

REPLY
painful | @painful | Jul 31, 2018
In reply to @painful "I feel for anyone going through this pain. This is the only time I have ever..." + (show)
@painful

I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

Jump to this post

I was sent to that particular Acupuncturist because of her cupping skills. I thought the whole cupping thing was a bit of a novelty at the time, but at that stage I was happy to try anything. I now believe that it was the cupping more than the acupuncture. There was no immediate change until a week after ny third session. I was in my fifth month of pain. Good luck

REPLY
1 reply
jjspokane61 | @jjspokane61 | Jul 31, 2018
In reply to @jjspokane61 "I'm a 57 year old female with PTS. My story starts in my early 20's when..." + (show)
@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced... but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs... so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor... luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues - PTS!!

Jump to this post

Hello patrick17 - I'm so grateful to my excellent neurosurgeon who recognized this as NOT a cspine issue! The last thing I want is a surgery I don't need that would not have resolved the pain and likely caused alot more like in your case! So sorry you had to go through that - it's a little discouraging to see you have been dealing with hand pain for so long! The gabapentin seems to handle most of my pain - until I forget to take it then things get crazy. My neck and shoulder pain is gone, elbow still gets cranky when I try to straighten my arm. My arm is definitely weak. Do you have the issue with not having the full range of motion with your arm? I had a spinal injection (when they were still saying it was cspine) and got back my range of motion in 3 weeks. Not sure if that's a coincidence or what. I'm scheduled for another one in Sept - if there's ANY chance it helped the first time I'm going to go ahead with it. I see another neurologist the end of Aug who is supposed to be able to confirm my PTS diagnosis - but I'm reluctant to go through another nerve conduction study if it's just for that reason.

REPLY
confused1955 | @confused1955 | Jul 31, 2018
In reply to @jjspokane61 "I'm a 57 year old female with PTS. My story starts in my early 20's when..." + (show)
@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced... but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs... so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor... luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues - PTS!!

Jump to this post

My conduction studies were a night mare. My hands and arms were jumping and falling . Within 48 HRS I had a heart attack brought on by pain and stress. I had a terrible neurologist and am on the look for a new one. I've already made appointment for acupuncture. We may have lousy neurologists but great acupuncturist. He taught in China for 9 years and has now been here for 25 years. Wish you good health.

REPLY
Ron Rubenzer | @user_cha272278 | Aug 1, 2018
In reply to @jjspokane61 "I'm a 57 year old female with PTS. My story starts in my early 20's when..." + (show)
@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced... but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs... so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor... luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues - PTS!!

Jump to this post

Look up Acupunture on Medscape if you want. I always see if a specific practitioner accepts insurance. If you have had a heart attack I would definitely see your Cardiologist Before exploring “complementary” treatments. Dr Ron Rubenzer.

REPLY
patrick17 | @patrick17 | Aug 1, 2018
In reply to @jjspokane61 "I'm a 57 year old female with PTS. My story starts in my early 20's when..." + (show)
@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced... but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs... so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor... luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues - PTS!!

Jump to this post

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.

REPLY
1 reply
patrick17 | @patrick17 | Aug 1, 2018
In reply to @painful "I feel for anyone going through this pain. This is the only time I have ever..." + (show)
@painful

I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

Jump to this post

Thank you for sharing your story. I am going to try acupuncture and cupping. I’ve tried many creams, occupational therapy, a chiropractor, but nothing has helped. I take liquid B vitamins every day and I try to eat well- no sweets or sugar. No more crackers. I just try to stick to real food. Diet is SO important, but not one doctor has ever said a word about it. Just had me try different meds most of which I could not tolerate. I hope you remain pain-free!!!

REPLY
arlenej | @arlenej | Aug 1, 2018

After a year and a half of thinking my husband had brachial plexus syndrome; he was diagnosed with sweat gland carcinoma in May. Make sure your doctor's check for everything & anything.....do not get focused on just one thing.

He is now undergoing radiation and chemotherapy treatments at Moffitt Cancer Center in Tampa, FL. What a great facility and we are pleased with his progress so far.

I pray each and everyday for all that are affected and touched by cancer and other devastating diseases. All we can say is NEGU - Never Ever Give Up!!

REPLY
2 replies
patrick17 | @patrick17 | Aug 5, 2018
In reply to @arlenej "After a year and a half of thinking my husband had brachial plexus syndrome; he was..." + (show)
@arlenej

After a year and a half of thinking my husband had brachial plexus syndrome; he was diagnosed with sweat gland carcinoma in May. Make sure your doctor's check for everything & anything.....do not get focused on just one thing.

He is now undergoing radiation and chemotherapy treatments at Moffitt Cancer Center in Tampa, FL. What a great facility and we are pleased with his progress so far.

I pray each and everyday for all that are affected and touched by cancer and other devastating diseases. All we can say is NEGU - Never Ever Give Up!!

Jump to this post

Arlenej, that is very good advice. I think I have something more going on than PTS. I have an appointment with another neurologist to get a second opinion. I wish I could find a PTS specialist that I could write to and get an opinion.
I am familiar with Moffitt Cancer Center. My friend was treated there and had a very good outcome. I hope your husband does as well!

REPLY
andylevine | @andylevine | Aug 5, 2018

My PTS ended up being related to a thymoma discovered a couple of years later. A very rare cancer that it's related to a number of autoimmune conditions.

REPLY
View MoreView Less
Please sign in or register to post a reply.