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Parsonage turner syndrome *

Brain & Nervous System | Last Active: Aug 4 7:56am | Replies (239)
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@petemidd

January 18th - something changed

I woke at 3 am with intense pain in my shoulders radiating down both arms

An ambulance took me into hospital and I was given diazepam to release my muscles.

I returned 2 days later as my voice had gone hoarse, the front right of my neck, numb to the touch and the pain was unbearable in my arms and shoulders in the evening. The pain woke me up at 2 am nightly and I had to bathe to ease the pain

2 weeks on they prescribed gabapentin and the pain is under control

I lost motor functionality in my left arm and now have a winged scapular on my right side.

I am struggling to make my doctors recognise the condition because it doesn’t fit typical symptoms.

I am wondering what steps I should take next because as a fit (well I was) man I am struggling.

To give you an idea of loss of strength on January 13th I could do 3 sets of 8 unassisted dips.

Today I cannot do 1

Very tough 🙁 any help would be greatly appreciated.

BTW I AM UK based so any advice for help in the north of England would be greatly appreciated.

Thanks
Pete

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Replies to "January 18th - something changed I woke at 3 am with intense pain in my shoulders..."
beryl | @beryl | Feb 15, 2019

Hello Pete my name is Beryl and I to am English......horrible experience and unbelievable pain ......I suffer from a thing called Polymyalgia Rheumatica...your experience sounds similar to mine only I had it all over the body ......it was bad .....didn't get recognized until I went to a good Rheumatolgist in Portland Oregon .....I now live in Oregon ......I know you will get some good feedback and information from John he is the person that helps us all ....he also suffers the disease and has experience that he shares.....you are not on your own but I know it feels like that .....good luck ......Beryl

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John, Volunteer Mentor | @johnbishop | Feb 15, 2019

Hello @petemidd, I would like to add my welcome to Mayo Clinic Connect along with @beryl. There is another active discussion on Parsonage Turner Syndrome where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion so you can meet other members with similar health conditions and can learn what helps them.

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

Have your doctors offered any treatment plan or suggestions to help with the new symptoms you are experiencing?

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Ethan McConkey, Moderator | @ethanmcconkey | Feb 15, 2019

Hi @petemidd as requested by @johnbishop I have merged your pos to this existing thread on Parsonage Turner Syndrome.

I alsow anted to tag fellow members @shazzah73 @adriennes @patrick17 and @confused1955 as they could provide additional support to you like @beryl did.

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