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?

Difference between seeing a Neurologist and an Orthopedist? After going to Urgent Care for elbow pain in September, I was sent home with prednisone and a referral for an Orthopedist. He was quick to tentatively diagnose Parsonage Turner's after an EMG and ultrasound. I don't have a definitive diagnosis yet (thought I did) because symptoms keep changing. Elbow pain has improved, but then I lost ability to make an okay sign with thumb and index finger – Kiloh Nevin Syndrome. Now, I also have bad hand swelling, poor grip strength, and hypersensitivity to touch. All this to ask is this "normal?" From what I'm able to find about this, is it all about managing the symptoms until it runs its course? @briannave Are you able to do any type of PT yet? I was doing a couple of half marathons a year and being unable to do any type of exercise is very stressful. Should I consult with a Neurologist? The Orthopedist said that I am their only patient with what they think is PTS. Next appointment is a week and half away – another EMG.

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@chriso12345

Difference between seeing a Neurologist and an Orthopedist? After going to Urgent Care for elbow pain in September, I was sent home with prednisone and a referral for an Orthopedist. He was quick to tentatively diagnose Parsonage Turner's after an EMG and ultrasound. I don't have a definitive diagnosis yet (thought I did) because symptoms keep changing. Elbow pain has improved, but then I lost ability to make an okay sign with thumb and index finger – Kiloh Nevin Syndrome. Now, I also have bad hand swelling, poor grip strength, and hypersensitivity to touch. All this to ask is this "normal?" From what I'm able to find about this, is it all about managing the symptoms until it runs its course? @briannave Are you able to do any type of PT yet? I was doing a couple of half marathons a year and being unable to do any type of exercise is very stressful. Should I consult with a Neurologist? The Orthopedist said that I am their only patient with what they think is PTS. Next appointment is a week and half away – another EMG.

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You are fortunate that the orthopedist suspected PTS. My orthopedic surgeon assured me that I needed ACDF surgery which I had and didn’t help. I then went to neurologist #1 who ordered an MRI of my brain and a lumbar puncture. Neither showed anything abnormal. He then performed an EMG which had me jumping off the table because it was so painful. He said that I was overly sensitive to it. He never came to a diagnosis. I went to neurologist #2 who also did an EMG. This time it was pain free. He ordered extensive bloodwork, all of which was normal. He came up with a diagnosis of atypical PTS. 21 months later I still have it and am not showing any improvement. My pain is terrible, but is somewhat controlled with meds, compression gloves, and heat. I would definitely see a neurologist. Try to see one who is highly recommended. Read patient reviews. Good luck!

Liked by jjspokane61

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@chriso12345

@patrick17 Yes, reading has helped. There just doesn't seem to be a lot of information available online. It was surprising, but I guess it's just not that common. I plan to ask my doctor how many cases he has seen at my next appointment. I get the impression that it won't be many. Luckily he checks with another doctor in the practice and I think that's why the diagnosis was so quick. Doctor #2 did my EMG and ultrasound. Very thorough. I so sorry that your pain has lasted this long and is getting worse. Thank you for the suggestions! I received a pair of compression gloves on Thursday. Although I measured per instructions, they seem too tight so will trade up to see what a larger size will do. Going to the library today to investigate books about pain management. Meditation as well. Normally I read on phone or iPad but touching these with my right hand is painful, so it's back to physical books for me. Thanks for the encouragement! I hope you find more solutions for your pain.

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Hi, I haven't posted in awhile, I've had 3 neurologists, each one having treated only one person with PTS, so after 2 years , I'm still suffering numbness, nerve pain, and weakness, but, in the big picture, I am so very much better! Hang in there, heat works great. Gabapentin I can't go without, but in lower doses I always wear a glove but can't handle compression, just leather, pilates and walking a life saver, exercise with no or little body jarring. I tried massage and cupping, made it worse. I am finally getting movement in my thumb and forefinger. Time, lots of time. I still take painkillers maybe one a week cold air is not our friend, hypersensitivity is what I have now. Just knowing others have this, that I'm not crazy is huge.

Liked by jjspokane61

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@patrick17

I’m so sorry for your condition. At least you have been diagnosed early. I have kept a timeline of my condition on the computer. Sometimes when I see a new doctor I will give him/her a copy. Anyway, it’s good to be able to look back and see how things have progressed and how I have been treated. I’m sure it is devastating for you since you were so used to working out. Hopefully your condition will be temporary. Most people with PTS do get better in time. Try to focus on what you can do instead of what you can’t do. Get yourself a good pain management doctor. Try listening to meditation music. It can be very calming. You will look at the world differently now. This takes a lot of patience and acceptance. I hope you will recover to your full strength!

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So well said, I wish I had kept a timeline, it is so important to focus on what you can do not what you can't, life is very different after this disease, there are ways you can work out, it really helps and takes your mind off the pain

Liked by Lisa Lucier

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@chriso12345

Difference between seeing a Neurologist and an Orthopedist? After going to Urgent Care for elbow pain in September, I was sent home with prednisone and a referral for an Orthopedist. He was quick to tentatively diagnose Parsonage Turner's after an EMG and ultrasound. I don't have a definitive diagnosis yet (thought I did) because symptoms keep changing. Elbow pain has improved, but then I lost ability to make an okay sign with thumb and index finger – Kiloh Nevin Syndrome. Now, I also have bad hand swelling, poor grip strength, and hypersensitivity to touch. All this to ask is this "normal?" From what I'm able to find about this, is it all about managing the symptoms until it runs its course? @briannave Are you able to do any type of PT yet? I was doing a couple of half marathons a year and being unable to do any type of exercise is very stressful. Should I consult with a Neurologist? The Orthopedist said that I am their only patient with what they think is PTS. Next appointment is a week and half away – another EMG.

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Hi. I am seeing a neurologist and a pain management specialist. I get the same feedback about how rare it is but I feel confident in their hands. My husband is physician and after all his conversations with doctors at Jefferson Hospital in Philadelphia these 2 specialist were considered the best way to go

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Thanks!

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@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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Your story sounds way too familiar. I have it in both shoulders arms and pa5in like acid being poured on my hands. I have very little use of my hands although I can now touch my thumbs and fingers. Pointing finger is always pointing. When I was diagnosed with PTS I had been bedridden for 3 years because of pain in my spine from neck to tailbone. I am still unable to sit for more than 5 minutes. So 3600mg gabapentin, 2 x 9mg hydromorphcontin 4 x 2mg dilaudid forbreakthrough pain. We have never changed the meds because these are what the would give me. They help my back but foes nothing for my hands. It came on sudden and has been 18 months. I totally believe my issue is in my neck but I can have an MRI because in my centre chest I had a stentput in my bile duct when the removed my gallbladder. 3 years ago they did an MRI and the stent exploded now there are pieces everywhere and it's more dangerous to remove than leave them there. I feel your pain. I feel so sorry for you. It's a nasty disease. I have already wasted from 168 to 90 lbs.

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@adriennes

Hi, I haven't posted in awhile, I've had 3 neurologists, each one having treated only one person with PTS, so after 2 years , I'm still suffering numbness, nerve pain, and weakness, but, in the big picture, I am so very much better! Hang in there, heat works great. Gabapentin I can't go without, but in lower doses I always wear a glove but can't handle compression, just leather, pilates and walking a life saver, exercise with no or little body jarring. I tried massage and cupping, made it worse. I am finally getting movement in my thumb and forefinger. Time, lots of time. I still take painkillers maybe one a week cold air is not our friend, hypersensitivity is what I have now. Just knowing others have this, that I'm not crazy is huge.

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HI, @adriennes – Thanks for the update. Will you share more about why you think the massage and cupping made things with your PTS worse and why the pilates and walking seem to be working well?

@chriso12345 – how did your next appointment and the EMG go?

@missme – are you still using the compounded cream with lidocaine, guaifenesin, ketoprofen and magnesium you mentioned some time ago? If so, is it helping you?

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@lisalucier

HI, @adriennes – Thanks for the update. Will you share more about why you think the massage and cupping made things with your PTS worse and why the pilates and walking seem to be working well?

@chriso12345 – how did your next appointment and the EMG go?

@missme – are you still using the compounded cream with lidocaine, guaifenesin, ketoprofen and magnesium you mentioned some time ago? If so, is it helping you?

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@lisalucier – next appointment with EMG is Tuesday, November 6th. Symptoms seem to have stabilized somewhat in the last 2 weeks. Arm pain is much better. Pinkie finger is normal. Everything else on right hand is a crazy combination of numb, painfully swollen, and hypersensitive. Started wearing a thin cotton glove wrong side out (seams hurt) to bed. Husband calls me Michael Jackson and that’s okay.

Liked by Lisa Lucier

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@chriso12345

@lisalucier – next appointment with EMG is Tuesday, November 6th. Symptoms seem to have stabilized somewhat in the last 2 weeks. Arm pain is much better. Pinkie finger is normal. Everything else on right hand is a crazy combination of numb, painfully swollen, and hypersensitive. Started wearing a thin cotton glove wrong side out (seams hurt) to bed. Husband calls me Michael Jackson and that’s okay.

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I wear breathable hairdressers black gloves on both hands in the day so that I touch things. Otherwise I can't even touch my clothing let alone remove them. Keeping them warm without being hot seems to work the best. Low barometer readings are killer. Warm summer days best. But to be honest nothing stops the burning. Both baby fingers are totally fine. Ring finger the side next to baby finger is ok but the other side burns. Palm and pads just below my fingers. When it first happened I lost about 60% of the use of my hands. I couldnt meet my thumb and forefinger. Although it's far from usable I can pick up things and I have a spoon will stuff like plumbers wrap around it. Cutlery is to small it falls out of my hands. Some days I can even paint but they are getting less and less since I am unable to get the cannabis oil since Saskatchewan Canada cannabis laws changed.now all that is available is bud which I have to smoke. Couldn't roll a joint if I tried for hours. So here it's all about recreational as they removed all medicinal forms. I was up to a gram a day of RSO oil in a capsule. You just have to swallow. Put the bottle in safe place with other medication and Bob's your uncle. Suffering in Saskatchewan

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@chriso12345

@lisalucier – next appointment with EMG is Tuesday, November 6th. Symptoms seem to have stabilized somewhat in the last 2 weeks. Arm pain is much better. Pinkie finger is normal. Everything else on right hand is a crazy combination of numb, painfully swollen, and hypersensitive. Started wearing a thin cotton glove wrong side out (seams hurt) to bed. Husband calls me Michael Jackson and that’s okay.

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@chriso12345 – fun that your husband calls you Michael Jackson with the cotton glove you wear to bed. Hope your appointment goes well today and you let us know how that goes.

@confused1955 – that sounds very hard having this burning that nothing stops. When you are able to paint, what subjects do you paint?

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@lisalucier

@chriso12345 – fun that your husband calls you Michael Jackson with the cotton glove you wear to bed. Hope your appointment goes well today and you let us know how that goes.

@confused1955 – that sounds very hard having this burning that nothing stops. When you are able to paint, what subjects do you paint?

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I can't paint living things but I love drawing anything that pops in my mind. Some are suitable to paint and some are done in fine delta. I love to draw old houses. My projects lately have been signs for my granddaughter. She likes to read the encouraging to read before hockey games where she plays a great defense position. Again so far this year they have won every game. She likes to share one of her quotes with her teammates, and now that she is in advanced gymnastics she has been asked to help teach the little ones. She always manages to have a quote or a story of how she works to overcome bullying at school. She has no trouble on the ice her team loves her but the girls in school are mean because she likes sports and not fancy clothes or dolls or even toys. Her room is like walking into a teenagers room except she believes in order to succeed you can't live in a garbage dump. Overstate. Sorry. As for my hands in the spring I will try acupuncture if I haven't been put in long term care by then. My husband refuses to work so he can be with me.

Liked by Lisa Lucier

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I was recently diagnosed with Parsonage-Turner Syndrome and have some questions/concerns about the cause and treatment. My sister was also diagnosed with same thing by a different Dr and was given different treatment plan. We both were at a health spa/wellness center and received acupuncture while there. I started with symptoms 2 days later with sharp, excruciating pain in my right scapula which radiated into my neck. I could not hold my head up straight for 2 days but am now feeling a little better. I did start a Medral dose pack and was given a muscle relaxer as needed. My sister was prescribed same thing as well as physical therapy and an EMG test. My doctor did not seem impressed that both my sister and I had acupuncture and were diagnosed with this syndrome. Is there anyone out there who can shed some light on this unknown condition? Thanks!

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@lisalucier

@chriso12345 – fun that your husband calls you Michael Jackson with the cotton glove you wear to bed. Hope your appointment goes well today and you let us know how that goes.

@confused1955 – that sounds very hard having this burning that nothing stops. When you are able to paint, what subjects do you paint?

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EMG showed “significant” / “severe” neuropathy in right hand. Good news? I was given the green light to begin PT and had my first appointment today. Great first appointment with therapist. He suggested buying 5 pounds of cheap rice, dumping in a big bowl and running my hand through it while reading or watching TV. I asked if it was okay to warm first and he said yes. This is so soothing!

Liked by jjspokane61

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@adriennes

Hi, I haven't posted in awhile, I've had 3 neurologists, each one having treated only one person with PTS, so after 2 years , I'm still suffering numbness, nerve pain, and weakness, but, in the big picture, I am so very much better! Hang in there, heat works great. Gabapentin I can't go without, but in lower doses I always wear a glove but can't handle compression, just leather, pilates and walking a life saver, exercise with no or little body jarring. I tried massage and cupping, made it worse. I am finally getting movement in my thumb and forefinger. Time, lots of time. I still take painkillers maybe one a week cold air is not our friend, hypersensitivity is what I have now. Just knowing others have this, that I'm not crazy is huge.

Jump to this post

I’m very happy for you that after two years you are beginning to show improvement. I was encouraged to read that. I am nearing the end of my 21st month and am not showing any improvement. I keep waiting, hoping, and praying for a positive change. I try to remain as active as I possibly can, but I’m limited by my pain and the effects of my pain meds. I hope and pray that PTS will one day be a thing of the past for all of us!

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