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?

@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!!

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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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@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.

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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!!!

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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!!

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@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!!

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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!

Liked by arlenej

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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.

Liked by Ron Rubenzer

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Where there is life there is hope. Anne Frank.

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@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!!

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My brother was a top administrator at Moffitt Center. He witnessed miracles there. It is a world class center for cure. Dr. Ron Rubenzer. Your well-being is my commitment.

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since my last update on PTS, i have been going for physio and have been told on my last visit that there is nothing more that can be done for me. so i went home and started my own exercises doing wall climbs etc. what seems to help is push ups. i have been following Chris Drake on youtube. he highly recommends push ups. i can barely do 1 because of the pain and arm/shoulder weakness so i do something called "girl push ups (using your knees intead of the feet). also i have started with planks. it is very slow but progressive. i was prescribed lyrica meds but have read that the side effects are dangerous. so i have not been taking any pain or nerve medication for the past few months and deal with the pain on a day to day basis. i have slowly stated to move my am towards my head. with pain and some difficulty i have been able to do some movements above my shoulder. everyday i try grabbing the top of the wall which is about 2 meters high with just my affected arm. i do this for about 3 or 4 times depending on how puch pain i can tolerate. the muscle waste is still there as well as the numbness. i still do not have most of the range but have been making slight progress in terms of raising my hand above my head. the outwards range is still very painful and difficult. i guess we have to take things 1 day at a time and keep being positive.

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Good to read your update, @yaseen786. That is terrific that you've started your own exercise program. Kudos to you.

You mentioned being prescribed pregabalin (Lyrica), but have not taken it due to side effects you've read about. If you wish to talk with other Connect members about this medication, here is a discussion on it: https://mayocl.in/2OfhO7M.

In addition, here is some information Mayo Clinic has available on pregabalin (Lyrica), if you'd like to read it: https://mayocl.in/2vJb5vp.

Has the numbness you mentioned before in your pelvic area and arm remained constant, or is it getting any better or worse?

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@lisalucier

Good to read your update, @yaseen786. That is terrific that you've started your own exercise program. Kudos to you.

You mentioned being prescribed pregabalin (Lyrica), but have not taken it due to side effects you've read about. If you wish to talk with other Connect members about this medication, here is a discussion on it: https://mayocl.in/2OfhO7M.

In addition, here is some information Mayo Clinic has available on pregabalin (Lyrica), if you'd like to read it: https://mayocl.in/2vJb5vp.

Has the numbness you mentioned before in your pelvic area and arm remained constant, or is it getting any better or worse?

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hi @lisalucier. thank you for your support. the numbness in my arm remains however in my pelvic area it seems to have lifted a little and does not trouble as much a it used to. it is mostly at night when i feel the pain on my pelvic side. i have been really pushing my arm to do some extra stretches. it does help but still alot of pain.

Liked by Lisa Lucier

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I was diagnosed with Parsonage Turner Syndrome December 2005. My neurologist informed me that in most cases it will go away within a year or 18 months. He said that if lasted longer than that I would probably have it for life. This is a pretty cruel sentence. I have suffered with the pain that everyone else has described for the past 13 years. It has had a huge effect on my life style because when you are having a pain day, you just do not function. I will have some very good days and then for some reason I get a flare up and I cannot get any relief. I find that sitting up right with my affect arm folded over my chest and my opposite hand supporting the elbow is my relief.

Liked by Lisa Lucier

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@painful

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

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Massage Therapy was also helpful – even if it just provided a short period of time when I could take my mind off my pain! My therapist would take the time to massage my hand – it would be so painful but also felt so good if that makes sense! I haven't tried acupuncture yet…

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Well… I had another appointment today with a neurologist referred to me by my neurosurgeon. The goal was to have another opinion on whether I have Pasonage Turner. So… he did a reflex test on my arms which had unexpected results. My bad side had MORE reflex than my good side. He said that if I had nerve damage we would expect LESS reaction not MORE. He then stated matter of factly that this was a sign of a central nervous system or a brain problem. So now I'm scheduled for a brain MRI to rule out that possibility. I will have another nerve conduction study this Friday also(oh joy). The one I had back in May was apparently too soon after the onset of pain to be a reliable result. I'd be very curious to know if others with PTS have had reflex tests and what the results were? I'm trying not to worry about a potential brain tumor – but that's hard to take your mind off of!! The next step after this would be a MRI of my shoulder looking for inflammation that could explain the pressure on the Median nerve. ALSO… he stated that the spinal injection I had in July may have done some good since the steroid may have affected nerves in the brachial nerve complex. So… I'm scheduled for another spinal injection in 2 weeks – I had been debating about whether to go through with it, and based on what the neurologist said today I will do it!
@patrick17

Liked by Lisa Lucier

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@dt0958

I was diagnosed with Parsonage Turner Syndrome December 2005. My neurologist informed me that in most cases it will go away within a year or 18 months. He said that if lasted longer than that I would probably have it for life. This is a pretty cruel sentence. I have suffered with the pain that everyone else has described for the past 13 years. It has had a huge effect on my life style because when you are having a pain day, you just do not function. I will have some very good days and then for some reason I get a flare up and I cannot get any relief. I find that sitting up right with my affect arm folded over my chest and my opposite hand supporting the elbow is my relief.

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Dt0958, thanks for sharing your story. I’m sorry you have suffered from the pain of PTS for so many years. You are right; it is a very cruel sentence. I hope you find something that will lessen your pain and get you back to enjoying life again. I’ve just reached the 18 month mark. I have 7-8 level pain in my right arm from my elbow to my finger tips. Recently, I’ve had some relief for a few hours when the pain decreases to about a 5. That’s so nice! The fog I sometimes feel from the pain meds is almost as bad as the pain itself. I’m always looking for answers to this condition. I tried acupuncture for 5 sessions. That seemed to worsen the pain, especially one time when she added electrical stimulation to one finger. I am also having cupping done. I’m not sure if that was the reason for a lessening in my severity of pain. I’ll probably try it a few more times. Fortunately, the cost is reasonable where I go.
Next year I will probably switch from a Medicare Advantage plan to Medicare. It’s been great having $0 premiums, but being restricted to certain doctors isn’t good when you have a rare medical condition.

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@jjspokane61

Well… I had another appointment today with a neurologist referred to me by my neurosurgeon. The goal was to have another opinion on whether I have Pasonage Turner. So… he did a reflex test on my arms which had unexpected results. My bad side had MORE reflex than my good side. He said that if I had nerve damage we would expect LESS reaction not MORE. He then stated matter of factly that this was a sign of a central nervous system or a brain problem. So now I'm scheduled for a brain MRI to rule out that possibility. I will have another nerve conduction study this Friday also(oh joy). The one I had back in May was apparently too soon after the onset of pain to be a reliable result. I'd be very curious to know if others with PTS have had reflex tests and what the results were? I'm trying not to worry about a potential brain tumor – but that's hard to take your mind off of!! The next step after this would be a MRI of my shoulder looking for inflammation that could explain the pressure on the Median nerve. ALSO… he stated that the spinal injection I had in July may have done some good since the steroid may have affected nerves in the brachial nerve complex. So… I'm scheduled for another spinal injection in 2 weeks – I had been debating about whether to go through with it, and based on what the neurologist said today I will do it!
@patrick17

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jjspokane61, it’s good your doctors are looking for answers to o your condition. It sounds like you are in good medical hands. My first neurologist sent me for a brain MRI when I first saw him. Fortunately, everything was “normal “.I also had a lumbar puncture which also had no abnormal findings. I almost wish I hadn’t had the lumbar puncture done since that was an invasive procedure. I think my neurologist was mainly looking for MS and didn’t find it. He never mentioned PTS. I’m not sure why not. My second neurologist immediately put that on the list.

I have not had a reflex test done so I can’t help you there. I have tried acupuncture without success and am still going for cupping at present. After 3 sessions I can see a difference with the cupping circles, but I’m not seeing a big difference in my pain level. I’ll try it a little longer and see if there’s any positive results. Thanks for sharing about your spinal injection. I hope it helps you. My doctors have not mentioned this. I’m looking for pain relief OTHER THAN FROM MEDS! I will read about this and mention it to them. Good luck with your EMG test. I hope it’s not too painful!

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