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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.
Replies to "HI I hope I'm in the right group. I'll start with my pre-existing conditions in case..."
I forgot to ask have you had a recent immunization? It can cause parsonage turner, mine was from abdominal surgery no one ever mentioned this rare complication. It is so painful, I am so sad youve aquired this, hang in , there it very slowly gets tolerable
Thanks for your reply. The link you sent is broken so I am unable to access the thread. I have had a reply from someone with the disease. Definitely already feel better knowing someone is out there that can understand the misunderstood.
No I had been sewing by hand about 10 hours a day, while laying flat on my back. Eating and sleeping. No surgery, no shots no medication changes, nothing.
Have any of you had your thymus imaged or examined? Very odd question to he sure. I had my PTS attack 4 years ago this month. It left my left arm with a 90% deficit. I regained about half over the next two years. Then it caused a tear in a tendon at the rotator cuff. The pre op ekg showed an anomaly, which led to an echocardiagram. That led to emergency heart surgery and which through an odd series of events led to a finding of type B2 Thymoma, an incredibly rare form of cancer (I was stage 2b). This was coincidentally removed during the heart surgery, which is an incredibly long way of explaining how my PTS was resolved. Thymoma can also be non malignant and is frequently associated with rare autoimmune disorders. My oncologist thinks the early stages of the thymoma may have been associated with the PTS. Both conditions are so rare there are no studies. But I thought I'd at least put it out there.
Thankyou, my dr's don't know much at all, my neurologist has only seen this one other time. Would that have been seen on a brachial plexus MRI? I've had a chest ct also, I will ask my primary , I had abdominal surgery so that's where they think the PTS came from, but I'll check that out. Hope you are doing ok.
I appreciate your input. I'm going to start making a big file for my Dr.
Do you get constant stabbing in shoulder area?
That's the classic symptom..
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I also have PTS, I felt your pain literally. I have a rare form, involving medial, radial and ulnar nerves. I'm a year in, all I can tell you is use heat and ice, do you have a tens unit? It helps me get movement in my arm and fingers, I walk but I understand you can't, time is all the dr's can tell me, it is very slow and painful, most people recover in a year or two. I was told most of my hand and forearm deficits will be permanent, I refuse that diagnosis, work the muscles you can with range of motion, don't over work, it is a very long recovery. My heart and prayers go out to you.