Parsonage turner syndrome *

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Hi, @shazzah73 - welcome to Mayo Clinic Connect. I can imagine it would be concerning to wonder if your Parsonage Turner Syndrome (PTS) has returned, with the pain in your shoulder and radiating down your arm and a tender spot on your shoulder. Hoping that some of the members in this discussion may have some input for you, like @tmachian @confused1955 @patrick17 @survivingpts @jjspokane61 @chriso12345.

Have you had the chance to talk to your doctor's office about these symptoms, @shazzah73?

@adriennes - hoping that some of these same members I've tagged here will let you know if they have experienced the effects of PTS in the medial, ulnar and radial nerves, leaving them with prolonged pain, denervation, extreme weakness.

@adriennes - how have you managed your PTS thus far?

My symptoms regarding this PTS is: Severe numbness in the face, which in turn is causing other issues (blurred vision, runny nose, feeling of imbalance etc) I have seen 7 doctors, none of whom can tell me why the numbness is in my face. I apparently have nerve damage in my neck (c4,5,6). I also have weakness in both shoulders. The only good thing is that I have no pain with this, that in itself makes me wonder what's really going on with me. Unfortunately, doctors are no help, nor are they really concerned.

@adriennes I am also female and most of my issues are in my median nerve in my right forearm and hand. I have significant and severe nerve damage in my hand. Plus the wasting of pronator in forearm. Also anterior interosseous syndrome.This started last September and is continuing to be a problem. I will say that things are gradually getting better. At first the ends of my fingers were so hypersensitive that I couldn’t stand touching anything, particularly metal. Since I spend my workday at a computer typing was terrible, and I spent several weeks typing one-handed. I still can only use the mouse with my left hand so that’s been fun since I’m right handed. The other thing that’s been helpful is that I am a remote employee so no one in my office really knows what I went through. Although that’s a double-edged sword because I think if I was in the office I would’ve been on disability instead of doing nothing but work and then sitting on the couch with a heating pad for a number of weeks. It’s like I lost about two plus months of my life, but I’m not going to complain too much because many folks here have it much worse. PT was great, best thing about it was understanding that it’s necessary to push myself to get better. Are you able to do any PT yet?

I know I've said this in the past (and it did help one other person) but my strange Parsonage symptoms resolved when my thymus was removed. It's a very obscure organ but seems related to several rare auto- immune conditions. I had a thymoma, which is cancer of the thymus. A simple x-ray image of the thymus would rule that out.

I have been diagnosed with Parsonage Turner Syndrome. MY left arm and shoulder are affected. I have be prescribed 25mg Amatrypeline daily. I am fiding that I am extremely moody, can the Amatrypeline cause this?

Hello @paulsheasby, welcome to Mayo Clinic Connect. There is another discussion on Parsonage Turner Syndrome where your post will have more visibility and you can meet other members sharing your health condition and symptoms. I'm tagging our moderator @lisalucier to see if we should move your post here for more visibility:

Groups > Brain & Nervous System > Parsonage turner syndrome *
-- https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

Mayo Clinic has some information on the side effects of Amitriptyline here:
-- https://www.mayoclinic.org/drugs-supplements/amitriptyline-oral-route/side-effects/drg-20072061

Have you asked your doctor or pharmacist about the side effects of the drug? Maybe there is an alternative medication they can recommend.

Hello, I certainly hope you don’t have PTS a second time. Once is one time too many! I have had PTS for nearly two years. At least that’s what my neurologist believes I have. Having said that, my condition began with severe shoulder pain on the top of my right shoulder. As I recall, the severe pain lasted for a week or longer and was very tender to touch. After that it spread to my neck and other areas of my shoulder. It was about 4 - 6 weeks before I started to feel numbness and pain in my arm which eventually spread to my hand and three fingers. I’m sure PTS is different for everyone. I pray that you don’t have PTS and will recover from your pain soon!

Hello, I have had PTS for nearly two years. Like you, three nerves are affected in my right arm. They are the median, radial, and axillary nerves. I have had prolonged pain. Unfortunately, it’s become worse as time has gone on. I also have numbness and muscle weakness, although some arm muscles have become a little stronger. Compression gloves help a lot as does a heating pad. Meds help some, but being in a fog most of the time is as bad as the pain. I’ve tried many other things, but nothing was of any help to me. My pain management doctor has recommended a trial of a spinal cord stimulator. I hope to do this in the near future. I don’t think my case is typical of people with PTS. Pain usually becomes less, and they have more improvement by now. I sincerely hope your condition continues to get better.

I get little relief from anything. Have been suffering with burning in my hands for almost 2 years. Mobility and strength have improved enough my thumb and pointing finger now meet again and I can pick up a pin. Not much else I can do cause when I touch anything the pain triples. I wear latex gloves periodicly throughout the day. It keeps my fingers from touching. I can touch my hair and the towel so I'm able to wash my hair. If I didn't have 8 other serious diseases maybe this one thing wouldn't be so bad. Stress seems to be the worst stresser. Good luck on your continued healing.