Parsonage turner syndrome *

Greetings, Confused1955. I have read some of your posts, and have a question. You said something about having a belly full of shrapnel. Was this from Military service in Vietnam? I ask because in Jan 2010, I had my initial onslaught of PTS. It was a painful and scary time, and left me with a badly changed right hand. I was diagnosed with Non Hodgkin Lymphoma last year, and as a grunt in Vietnam, my disease was 100% attributable to Agent Orange. Since the Lymphoma diagnosis, I have become more knowledgeable about the VA and the presumptive list of diseases assumed to be caused by that exposure. Parkinsons is on the list, but "Parkinsonism" is now under consideration to be added. Parkinsonism is a condition that exhibits symptoms similar to Parkinson’s (tremor, rigidity, postural instability, bradykinesia), but is not a true Parkinson’s diagnosis.
Are you a Vietnam veteran? If so, you need to be working with a VA service officer. I plan to explore this subject more deeply. There is no doubt that some herbicides affects the neurological system, and PTS is so rare that a link to Agent Orange may not have been studied properly.

I hope that you are OK. Your last post did not sound good, so let us know how you are coming along, and let me know if you are a VN Vet.

Thought I would give this page a quick update on my progress. I was able to SLOWLY wean myself off of the Gabapentin I was taking. It took me 6 months of slowly reducing the amount to get completely off of the drug. I've been off for 2 months now and am very glad to have clear thinking, vision and my motivation back. However, the pain in my hand continues. I still have total numbness, horrible pain sensations, I can fully move the hand but it is painful making a full fist. I've just determined that living with THAT pain is better than living with the drug haze caused by the Gabapentin. So... it's possible to reduce or even eliminate that drug. At least now I know what my true pain level is... if needed I can go back on the gaba - but so far so good!

I did the same thing and I no longer use it. Doc said it was just a bandaid for pain and I'd rather live with the little pain that I actually do have now.

Hello @smf, welcome to Mayo Clinic Connect. There is already a discussion for Parsonage Turner Syndrome. I'm tagging our moderator @lisalucier to see if we can move your post and combine it with the following discussion where you will meet other members discussing Parsonage Turner Syndrome.

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

May I ask if your doctor shared any suggestions for treatment or therapy with you?

Would love to connect with people who are suffering from Parsonage Turner Syndrome. Would like to hear how you are coping and what progress one can expect.

Hi, @smf - just wanted to let you know I did move your post here as @johnbishop suggested to this existing discussion on Parsonage Turner Syndrome so you can connect with others on how they are coping and what progress one can expect. Hoping @kgoodwin9 @jjspokane61 @11b20 @adriennes @elained @richman54660 and others will have some thoughts for you.

When were you diagnosed with Parsonage Turner Syndrome, @smf? What have you found particularly useful in managing your condition thus far?

Hello Lisa, Thanks for finding the right place for me. I am very interested in connecting with others. I was diagnosed in May of 2019 with PTS. It was the result of a broken wrist, either the surgery but most likely the nerve block. I am a 68 year old woman who has never had any serious illness or surgery. I worked out, was very healthy and full of energy and joy. This has changed my life significantly. I have it on both arms. My right hand is severely affected. Thumb and forefinger is totally numb. Top digits of both thumb and forefinger will not bend. Always feels pins and needles at best.

I have started using CBD lotion this week. Will see if this helps. Gabbepentin helped in the beginning when I had more pain...but no help to pins and needles, so I stopped. I exercise my arms and hands almost daily. I do yoga once a week. I distract myself through activity, such as working on my art gallery/shop and my photography. BTW: I can no longer use my camera or read which I used to love to do.

I have other questions for the group but for now, I hope this explains a bit more about me and my managing and coping

Hello @adriennes, My symptoms are same as yours and I do my exercises. Started CBD cream this week. As I see you wrote this 2 years ago do you have any improvement? Sandy

Hello,

I have recently been diagnosed with Parsonage Turner Syndrome. I have lost a lot of muscle in my dominant right hand and regularly have numbness and shooting pain from my shoulder down to my fingers. Typing is becoming very difficult for me. I have good days and bad days, but the bad days can get pretty intense. I'm scared that I will come to a point where I can't do my job because I will not be able to use my right hand.

Does anyone have any suggestions on how to manage the pain? I've read an old thread where people have used ice and heat, exercise and a tens unit. What has been most effective for you?

Thanks,
Missy

Hello Missy... so sorry to hear about your pain. My PTS started 2+ years ago - I can tell you it WILL get better. My BEST advice to you is to find a doctor to work with who can give you steroid shots. Over the course of my case I had 2 spinal injections in the neck and 2 injections in my index finger. After each steroid injection (about 2 weeks after the injection) I would see an improvement in my symptoms. I would say the SHOOTING pains lasted about 6 months and after that the biggest pain source was my hand. Because of the pain and swelling I completely stopped (or couldn't) bend my index finger. I finally went and saw a hand specialist and he gave me the hand injection and sent me to physical therapy. It was tough therapy - very painful as they slowly forced my finger into moving again. Probably 2 months of hand therapy and I was finally able to fully bend the finger again. I took alot of gabapentin along the way - I do think it was helpful but getting off of it was a long process. It was about a 6 month long weaning process to get off of it. Decreasing the dose by 100 mg per every 2 weeks or so until I could finally stop it all together. My hand is still numb and painful every day but I'm able to push through it. The strange overall weakness of the arm is really a freaky feeling. I've been off the gaba for 6 months and feeling better every day.

I think both ice and heat are helpful. At work I would always have an ice bag at my desk. (I had to stop using my right hand for the mouse - learned to use my left.) I used rice bags that can be microwaved - I still use a heating pad at night to calm it down before falling asleep.

Post again and give us an update about how you are doing. My heart goes out to you... I know how overwhelming it can be to feel like no one can understand what you are feeling - I always said there's no outward evidence of my pain so no one really understands. If you have a bleeding wound everyone can SEE why your in pain - but with nerve pain it's almost like its in your head and not real. But its VERY real!