In August 2017 I was diagnosed with an atypical presentation of Parsonage Turner Syndrome. It has now been 15 months since I experienced severe right shoulder pain. This lasted for about two weeks, and then I started to get tingling and numbness in my right forearm. Over time this progressed to my thumb, index and middle fingers of my right hand. My forearm and especially my hand became quite painful. An MRI of my neck showed something pressing against a nerve at C6-C7. An EMG test was also performed.

Anterior cervical discectomy and fusion (ACDF) surgery was performed at C6-C7 at the end of May 2017. While the surgery went well, it did nothing to relieve the pain in my right arm or hand. To make matters worse, two weeks after my surgery I began to feel the same tingling, numbness, and pain in my thumb, index, and middle fingers of my left hand. Ugh!

I have had several MRI’s, EMG’s, and other tests and have been seen by two neurologists. This led to the diagnosis of PTS. After 15 months I am no better. In fact, the pain in my right arm and both hands is getting worse.

During this whole time, my feet have been numb, but fortunately have been without pain. Lately, the numbness in my feet has been more noticeable and has spread to my calves. Has anyone who has been diagnosed with PTS also experienced numbness in your feet? If so, I would be very interested in hearing from you or anyone else who has suffered with PTS for any length of time. Thank you!