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adriennes
@adriennes

Posts: 21
Joined: Sep 10, 2017

Parsonage turner syndrome *

Posted by @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

REPLY

@jjspokane61

Update: I had the 2nd steroid injection in my hand 1 week ago. This 2nd shot was NOT nearly as painful as the first (I think because it was less swollen so there was more room for the extra fluid). As of 3 days ago, I am ABLE to make a tight fist now! The tendons are still tight – but less painful than before. I keep opening and closing all day long… so excited to be able to! I will continue with the gabapentin for now… maybe if all is still good with the hand in a couple of weeks I'll start another attempt to get weaned off the drugs! 2018 has NOT been a great year for me… excited to keep getting better and hoping for a much better 2019! So… the take away from this is… if you have the fixed finger issues due to PTS… make SURE you go and see a HAND specialist. Tell them to consider that this may be tendonitis caused by the swelling in your hand. I'm so pleased with my outcome at this point… I want that for everyone else suffering out there!!! Merry Christmas!! JJ

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I’m so glad that the injection in your hand has had such positive results! That’s great you can make a fist. I hope it stays that way. I hope 2019 is a better year for you and for all those suffering with pain. Merry Christmas and a Happy, Healthy New Year!

Hello,
I have also been diagnosed with PST. The question I have with this diagnosis is I am not experiencing any pain. The main problem I have is numbness in the face, head, feet, especially the face, why is this? The facial numbness cause other issues such as a feeling of imbalance, runny nose, get hot and a little sweaty. It really gets bad. Doctors tell me they can't do anything about nerve damage. Really Docs? It's really unbearable at times

I am so sorry for your diagnosis. I was diagnosed almost two years ago. It is a nasty disease with no outward signs so friends and family suddenly do not understand. Unfortunately it was the excruciating pain that brought me to the Drs. After some testing 1 neurologist said I has PTS, then a specialist in ultrasound for diagnosis (can't have MRI due to medical shrapnel in my belly from gallbladder surgery in the 60s) he said it was absolutely not PTS, but mono Neuritis multiplex. Then their was fights between these two on who had the right to tell me what I had. Ok so I have PTS, neurologist said she would send a letter to my primary care Dr. When I went I asked her about the diagnosis. She confirmed she had received the letter so naturally I'm firing questions at her. THEN SHE SAYS…..IVE NEVER HEARD OF THIS DISEASE IF YOU WANT TO LEARN ABOUT IT YOU WILL HAVE TO GOOGLE IT. BUT I PROMISE, we will keep you comfortable. In 2 years my medications have never been adjusted. There is nothing that really works for the pain. I have spinal issues and was already on Gabapentin. Bad bad drug and it does nothing and I have been trying to wean myself off but no success. I take 9mg of hydromorph contin at 9 am and pm. Time release. 2mg dilaudid for break through 2x a day. Prescription is for 4 pills a day but it doesn't work well enough for pain to go through the worst constipation. If you were told there is nothing that works for pain management or disease control it is pretty well true. You are fortunate not to have pain and I pray that continues. My hands feel like they are in boiling oil. When move my shoulders it feels as though someone is twisting the shoulder forcibly. I have a patch on my right hip that burns like my hands. My dad also had this with no pain just numbness and what he described as his hands felt like sandpaper. Good luck as you live with PTS. I continue to pray for all with neurological diseases that some day there will be help for us. I'm now preparing my brain to be commuted to long term care as I'm now in a position where I require 24/7 care.

@lisalucier

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?

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I have not found anything that has helped alleviate my numbness. My numbness is mainly in the face which causes other issues, such as: Runny nose,feeling hot and borderline sweaty, blurry vision etc. This gets really bad sometimes. When I raise my arms at shoulder level or above, that is when it gets bad. Face becomes more numb, hot, sweaty and a feeling of loss of balance. Why is this?

Doctors tell me that I have nerve damage in the C4/5/6 in the neck. Okay, I had cervical stenosis surgery in July, that did absolutely nothing. The numbness in my face never goes away, it's there 24/7, my feet get numb as well. I have had several MRI's, scans, whatever, doctor tells me that there is nothing they can do for nerve damage. I think it's more a lack of concern and effort on their part. Meanwhile, I just continue to suffer.

@adriennes

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

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I was diagnosed Parsonage Turner about 8 years ago. I mostly recovered but still have problems with fine motor skills in my hand.
2 days ago out of nowhere my same shoulder started hurting pretty badly. Movement made it worse. Pain radiates down my arm. The pain is a bit less now but still there. I was wondering if Parsonage Turner has returned. What I do notice and I am not sure if that is a symptom of it is that a spot on the back of my shoulder is very tender to the touch, it hurts when I lean against it. I remember I had that 8 years ago too, when I was diagnose with PT.
Can anyone tell me if that is a symptom?

Thanks!

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.

@lisalucier

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?

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@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.

@paulsheasby

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?

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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.

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?

@shazzah73

I was diagnosed Parsonage Turner about 8 years ago. I mostly recovered but still have problems with fine motor skills in my hand.
2 days ago out of nowhere my same shoulder started hurting pretty badly. Movement made it worse. Pain radiates down my arm. The pain is a bit less now but still there. I was wondering if Parsonage Turner has returned. What I do notice and I am not sure if that is a symptom of it is that a spot on the back of my shoulder is very tender to the touch, it hurts when I lean against it. I remember I had that 8 years ago too, when I was diagnose with PT.
Can anyone tell me if that is a symptom?

Thanks!

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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!

@adriennes

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

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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.

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