Parsonage turner syndrome *

It seems I have they same rare form where I have lost they ability to open my right hand and have about 20% strength in my grip strength, wrist and tricep. I'm only a couple months in and my hand and forearm are starting to look like a skeleton from the muscle wasting. I've always been a big strong guy and work out often and this is devastating to me. It's been a year since this post that I'm replying to... any words of encouragement?

Mine hit me had as well. I was working out 5 or 6 times a week. Have you tried physical therapy? They helped me find movements I could do. Ultimately my doctor's diagnosed me with thymoma which is a rare cancer often associated with auto immune conditions. The removal of that time really seems to have resolved things but I still have a small deficit.

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!

Thank you for sharing this information. I’m sorry for your pain - I go through periods of numbness from my neck to finger tips and also my hips to legs. They couldn’t figure out what was causing it. They did perform an elecgromyography but didn’t show issues. I have chronic neck and shoulder pain - they tried to do a cortisone injection but the discs in my neck were to close together (due to bulging) that they were not able to insert the needle. Appreciate information since it described what I experienced. Heat definately helps!! Love my heating pads. Best of luck and hope you feel better soon.

When looking back on my ordeal, heat was great and knowing what I do now I would have used it more. If you need a good nights sleep then get one or two hot water bottles. I used them all day. My period of pan was just under six months. It did straight after two weeks easy living in on Miami beech. I just want to send my dearest sympathy to anyone going through this as no one really can understand the pain.

Another thing I found extremely helpful was a product called Thermacare Heat Wraps...they are made for neck, back, knees, etc. They are air activated and have adhesive to apply to your body. They last from 8-12 hours - best part you can conceal them under your clothing during the day or leave them on at night and no cords. They are really helpful - you can’t control the heat level but I have found them to be very helpful and convenient to use when I can’t apply a heating pad or plug one in..sleeping is much easier with them on instead of plugging in my heating pad. Hope this is helpful.

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.

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!

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.

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