Hi, my name is Ash1972! New here. I have Parsonage Turner Syndrome — Scope | Disability forum
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Hi, my name is Ash1972! New here. I have Parsonage Turner Syndrome

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Ash1972
Ash1972 Community member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
I recently read a post by a member re Parsonage Turner Syndrome, a condition which I have had since August 2019.
Im lucky to be free from the acute pain when the symptoms was at it high. Extremely crippling. The effects targeted my upper right chest and tricep, with 40 percent loss. Though im working on getting bk in shape as I was a keen athlete. 
The lingering sum are weakness and most recently started to drop things and finding it difficult to open any packets, cans, mostly the small motor functions. Bloody annoying, to top it off, been referred to surgery to have the gall bladder removed and left shoulder surgery, plus a mri on the brain. The pain from the gall bladder would say is equally as bad a the Parsonage. Too scared to eat after 6pm.
I was wondering if this condition counts as a disability, i have recently applied for PIP. 
and
Hopefully i will be on the mend. With the big 50 next year.

I would appreciate any links /organisation or similar peeps to help advise with this condition.

Thank you 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome and thanks for sharing with us about your conditions 

    PIP isn't about the diagnosis or condition but how you are affected with the tasks and daily living 

    Have a look at the descriptors to see what they assess you against 

    The PIP section in here will show them 

    Any questions just ask 
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  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    edited April 2021
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    Hi @Ash1972 :)

    First of all, welcome to the community! It's good to have you with us. 

    Thanks for telling us a bit more about yourself. Hopefully, some of our members will reach out to chat and recommend some additional support networks for Parsonage Turner syndrome. 

    Also, following on from janer1967's post, I've included a link to the relevant page where you can find some of our member's posts on PIP and related benefits. You can find that here. 

    Hope that's helpful to you in getting started on the community. Just give us a shout if you have any questions or you would like some help finding your way round. 

    p.s. I know it's a way off yet, but wishing you all the best for the run-up to your big 5-0 next year :smiley:
    Online Community Coordinator (she/her)

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  • Ash1972
    Ash1972 Community member Posts: 4 Listener
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    Thank you so much.  <3
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Welcome to the community @Ash1972 and thank you for telling us a bit about what you've been through, I hope you enjoy being part of the community :) 
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  • GavMc
    GavMc Community member Posts: 4 Listener
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    Ash1972 said:
    I recently read a post by a member re Parsonage Turner Syndrome, a condition which I have had since August 2019.
    Im lucky to be free from the acute pain when the symptoms was at it high. Extremely crippling. The effects targeted my upper right chest and tricep, with 40 percent loss. Though im working on getting bk in shape as I was a keen athlete. 
    The lingering sum are weakness and most recently started to drop things and finding it difficult to open any packets, cans, mostly the small motor functions. Bloody annoying, to top it off, been referred to surgery to have the gall bladder removed and left shoulder surgery, plus a mri on the brain. The pain from the gall bladder would say is equally as bad a the Parsonage. Too scared to eat after 6pm.
    I was wondering if this condition counts as a disability, i have recently applied for PIP. 
    and
    Hopefully i will be on the mend. With the big 50 next year.

    I would appreciate any links /organisation or similar peeps to help advise with this condition.

    Thank you 

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  • GavMc
    GavMc Community member Posts: 4 Listener
    edited April 2022
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    Hi Ash sorry to hear you have had these issues just been diagnosed with pts myself, I think I had the acute phase in sept 2021, I have it bilaterally so both shoulders affected but in different ways.

    I have MRI's planned this month and neurological assessments in may, significant muscle atrophy in right deltoid and general motor restrictions.

    Im trying to stay active as I can hopefully this help??

    any way hope your well and making progress

    Gavmc 
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Welcome to the community @GavMc and thanks for sharing your thoughts here :)

    I can see the original poster hasn't been active since 2021, so might be slow to respond, but I'm sure it's definitely a help to know there's someone such as yourself who can relate to having PTS.

    How are you feeling about your upcoming MRI's and assessments?

    Do let me know if I can help further, or if you ever need a hand with anything, and enjoy your time on the forum!

    Alex
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    Scope

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