Parsonage turner syndrome *

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.

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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.

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Hello good people. I have been diagnosed wit pts for about 4 months now. Im a male 42 yrs. I believe it is more common amongs males to get this syndrome. With me there was no surgery or trauma. Just woke up 1 morning with neck pain & thought it from sleeping too much on 1 side. A week later had this stabbing pain on the shoulder bone. Been for MRI as well as nerve conductive studies. Doctors here dont have much experience with this type of syndrome. Currently going cor physio every 2 weeks but not much help there. I have also developed numbness and some pain on my right upper thigh jus below the hip bone. I think it is the pelvic area. I still have alot of pain. Part or the arm is totally numb. Theres also waste muscle. So from what i have been reading on this corum thus far is that this takes a long time to heal. I have also read somewhere that nerve transplant can also help with the recovery. I currently do not sleep much at night due to the pain. Pain is not as bad as the 1st couple of weeks though. Any advise regarding nerve surgery? Pardon me if i take some time to respond as im in south africa. The time zones are way different.

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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

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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