parsonage turner syndrome

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
admin
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Re: parsonage turner syndrome

Post by admin »

A NEUROLOGIST CAN DO AN EXAM AND ALSO AN NERVE CONDUCTION STUDY.
Fred
admin
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Re: parsonage turner syndrome

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i had a test where they put needles with electric current? or something into where my nerve should be in both arms, and it shows little response when they sent it thru my right arm, and made my left arm fly into the air. the second time round i got 3 weeks of 1 appt a week of physio. and all doc prescribed was codydramol, then diclofenac, today i still ache in my scapula shoulder down my arm and in elbow, i want to be able to tell my doctor this is what i have, not just damage to the thoracic nerve. also i wondered if any1 could tell me how normal it is to have this thing reccurrently, over 6 years now. I have two young children aswell.
admin
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Re: parsonage turner syndrome

Post by admin »

Ruth-I went to 6 doctors, physical therapy, & a chiropractor before I got diagnosed by the last doctor(a neurologist). Try a different doctor if they're not giving you an answer. It sounds like parsonage turner but I'm new at this. I've only had it for 3 months. Donna
admin
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Re: parsonage turner syndrome

Post by admin »

There are several names given for peripheral neuropothies. I don't think it matters what it is called. The treatment is generally the same.

Fred
admin
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Re: parsonage turner syndrome

Post by admin »

Fred,

As I have just been diagnosed, I can't imagine how hard this was for you. I am 24, and the onset of PTS has left most of my right arm numb from the shoulder down through the thumb. My bicept is usless.

I have a positive outlook on my recovery and am just thankful it is not something terminal. However,I am not able to work, I have been a server(waitress) for 8 years. I can still go to school and am taking 15 hours currently.

Did you insurance help you out financially?

Any information would be great. Your story is very touching and inspirational. Your wife sounds lovely.

Thank You,
Karen
admin
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Re: parsonage turner syndrome

Post by admin »

I had Parsonage-Turner several years ago. I had it three separate times, first in my right shoulder, then my left and then in my right again. I lost the use of my thumb and forefinger as well as the atrophy and weakness of the shoulder and forearm with numbness.The best treatments I received were injections of Vitamin B Complex, along with painkillers and heat therapy. I don't know whether any doctors will use B Complex injections any more, but I swear by them. Good luck, it does get better but very slowly and I still have permanent upper arm weakness.
ldysmm
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Joined: Mon Dec 01, 2003 8:58 pm

Re: parsonage turner syndrome

Post by ldysmm »

I tried to reply a few minutes ago, don't know what happened. I had Parsonage Turner three times several years ago, once following child birth. The best treatments I found were Vitamin B Complex injections, pain killers and heat therapy. I don't know whether any doctors will administer B Complex injection any more, but mine was an older M.D. who was at a loss what to do for me. I was told to take high doses of B Complex for the rest of my life. Good luck, it does get better but I was left with permanent upper arm weakness.
elvenflow
Posts: 5
Joined: Wed Oct 29, 2014 2:48 am
Injury Description, Date, extent, surgical intervention etc: Parsonage turner syndrome, hereditary

Re: parsonage turner syndrome

Post by elvenflow »

I have parsonage turner secondary (this time, the first attack was after my vaccinations as a child) to a dental extraction last May. My great uncle got it after being gassed in WWI, so he must've been diagnosed shortly after it was named.
Using a sling while walking has helped immensely, as has having a pillow under the arm when I sit. A water filled pillow with adjustable thickness has been very useful for my neck. Other than that, the best pain control has been provided by oral cannabis, prepared either as Organic Cannabis Oil (OCO) or in coconut oil. I also use a cannabis based rub on the shoulder. Obviously I am in a medical state. Opiate and opioids don't touch it.
Oscarx
Posts: 1
Joined: Tue Sep 29, 2015 10:41 am
Injury Description, Date, extent, surgical intervention etc: parsonage turner syndrome

Re: parsonage turner syndrome

Post by Oscarx »

Hello, I had the parsonage turner syndrome three months ago and now I'm taking the use of the arm. Unfortunately it was not diagnosed until after a month and a half and I had severe pain. Advice to those who happen to use this heat (hot water baths, patches).
I wanted to ask for advice on rehabilitation, what you recommend? I would also like to know whether the muscle that has atrophied is recovered 100% or less, and if the pain that I still have will disappear with time.
Thanks for your answers.
Master DIVER TOM
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Re: parsonage turner syndrome

Post by Master DIVER TOM »

What is this, :shock: Something to try I guess???
There are many posting here , without help from doctors help in a Life time :shock: For Real ;)Today being 64, with Birth erbs and a injury to my only good arm :shock: Well I rather try to help here to , Many posting , found UbPN , Birth erbs or latter in life injuries , happen To :shock:With or without any doctors help or to Try :shock: What is the best thing to try , is what you and I try to adapt to in Life :shock:
Finding a True pain relief trying to adapt :shock: Is a Quest trying in life :shock:
I would rather be in pain in trying :shock: than being despair not trying to adapt :shock:
Just posting from the No help club here Posting from the past :shock:
It is better to try than give up!!!! ;)
We all try by post here :) :D There is many posting, with help and without hope to :shock:
Well than help happen by trying to ;) :D We all find are way Trying, It is fact by Post, I think :roll: What a Baby learn in a life time and trying with Birth erbs trying to help , well it happen here to by post :shock: ;) To
Are injury are never the same :shock: trying , well it all about us trying :shock: ;) :D With or without a doctor help or direction in life :shock:
I wish i was better at Grammar to Explain :shock: I try ;) We all come with a Hug, ;) :D By our post trying ;)
Just thinking :shock:
Tom
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