Parsonage turner syndrome *

Hello @adriennes, welcome to Mayo Connect. I am glad you found us. Connect is a good place to share your health story, ask questions and find out what others with similar health concerns are doing for treatments. I don't have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

I am tagging another Connect member @andylevine who has talked about having Parsonage Turner Syndrome to see if they have any more information. Here is a link to the discussion - https://connect.mayoclinic.org/comment/51881/bookmark/?ajax_hook=action&_wpnonce=4e83f240d9

John

Hi, @adriennes. I'd like to add my welcome to Mayo Clinic Connect. I am sorry that you went through agony, and I'm glad to hear that you can function now.

Glad you have now met @johnbishop. I also thought you'd like to meet two of our other volunteer mentors who are knowledgeable about brain and nervous system disorders, @kdubois and @kariulrich.

Are you finding anything that helps with the weakness, numbness and pain?

This doesn't really help, Thankyou though, my PTS isn't following the norm this is why I'm looking for anyone else ,

Sounds like the length of your attack was long. But the lingering pain, numbness and for me extreme weakness in the impacted area is the norm. Mine seemed to have its genesis in defective t-cells produced by a malignant Thymoma. See if they will image your thymus, which is simple matter, to rule that out. Otherwise PTS is a waiting game and exercising helped me a lot.

Thank you so much for the info, I have been doing pilates all along, stepping it up as tolerable, the atrophy in my arm and hand is scary, my neurologist says I'm at a plateau with muscle gain, been the same for 3 months but I compensate so i thought it was better. I will speak to my doc about the scan, so scary for you, I pray you are well.

I use a tens unit, heat and ice, I sleep sitting up packed in pillows, for a year now, I can't lie down for more than a couple minutes, my brachial plexus starts screaming all through out my neck, shoulder, arm, hand, fingers, I take gabapentin, though I hate it I know when I don't take it. I practice pilates, when I do I am so close to the old me, it helps so much, and yes I do take low dose pain killers occasionally, but no longer daily at all.

And walking, I walk miles and miles, hope this helps anyone else

For me one of the worst parts were the EMGs that neurologists kept giving me. At a certain point I told them unless it provided life critical data or a cure, I'm not going through it again. I found physical therapy useful to show specific exercises and movements that could strengthen around the atrophied area. For me it was the infrasprinatus muscle, so the external rotation function was impaired in my left arm 90%. I still have obvious denervation of that muscle some 4 years later, but I have worked around it.

Thankyou for the information, I've had 2 EMGs, they were not pleasant, I was lucky the neurologist giving me the first one said only one thing he knew of could read like that, PTS. If my insurance would pay I'd still be going to PT. I do all the exercises, I have been told my thumb, index finger and forearm will never be the same, I just wish this discomfort would get better, otherwise I workout, kayak, work, just a little handicapped.

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.