Struck down with ill health all of a sudden and now find everyday a struggle — Scope | Disability forum
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Struck down with ill health all of a sudden and now find everyday a struggle

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Susan46
Susan46 Community member Posts: 16 Connected
i was fully active 11 weeks ago and struck down with ill health all of a sudden and now find everyday a struggle. im new on here and looking for people in the same situation who can advise and just generally be friends. i suppise really im looking for answers and to try understand my condition , maybe not feel so alone.

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  • Alex
    Alex Posts: 1,305 Pioneering
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    Hi @Susan46,

    Welcome to the community and sorry to hear that you're struggling. I hope we can help. If you don't mind me asking, what's your condition? Maybe we can find other users in a similar situation.

    Thanks.
  • Susan46
    Susan46 Community member Posts: 16 Connected
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    hi
    no one knows yet. it happened 2 yrs ago starting from loss of feeling and use in hands. then shoulder and neck. i had to give up great job. 18 months later it disappeared only coming back 3 months ago . started the same way but have weakness down right side in extremities and when talking i stutter alot now and forget what im talking about stare blankly before continuing my talk but about something completely out of context. my family tell me its happening more and more. dizzy and unbalanced the gp has got me a wheelchair and aids for the home. on top of that, both incontinences and basically my life seems sitting at home and too weak to do anything cos my neck and bottom of spine are both very very painful and thd pain is constant including the migraine type headaches. i get no relief from any meds
    i had mri which showed bulging disc on bottom of spine and spurs. however the gp says maybe all the symptoms i have may come from somewhere else and i have to get used to it. no explaination though and im thinking bad things. i cant get any real answers because as gp says...we dont have any to give
     
  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hello @Susan46
    A very warm welcome to the Community!
    Please make yourself at home!

    I'm going to include a link to discussions about undiagnosed conditions.
    https://community.scope.org.uk/categories/undiagnosed_rare_conditions 

    I hope that will be of some help. If you need anything, just ask. We are a very friendly lot.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
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    Hi @Susan46

    ” Welcome “

    It’s great to meet you this morning.

    I currently have/had a “Rare Condition”

    Following a Stroke & a number off “Brain Opp’s”

    I’m currently a “ok”

    Unfortunately I’m now left with “chronic pain 24/7”

    I’m now part of the team here at “Scope”

    Please please “dive in”

    If there is anything that I can help/support you with please let me know????

Brightness