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Adhesive Arachnoiditis - hoping to find support in how to cope without medical support and care.

Lanie7Lanie7 Posts: 6Member Listener
edited August 29 in Disabled people
Hi! My name is Lanie and looking forward to seeing what you are about. I have multi level disc injuries and a rare neurological disease called Adhesive Arachnoiditis. I cannot sit at all without excruciating pain and disc bulging. All my nerve endings inside my spine have been damaged and now cause intense pain everywhere. I have to lie on my bed 24/7 but can manage to get up to get something when necessary. Nerve damage to both legs. I still have a good life because of my Christian Faith. Without it I would not be here. My main concern is I have no medical support. The AA disease was caused initially from medical harm which means no Gp or consultant will see or help me. They are afraid of litigation which I wouldn’t do. They also dont like helping when they do not understand the problem.  I am finding their attitude to me very hard to cope with. I am not asking for advice on medical help. But hoping to find support in how to cope without medical support and care. Thank you everyone! 

Replies

  • steve51steve51 Posts: 5,876Community champion Disability Gamechanger
    Hi @Lanie7

    Good Afternoon & Welcome 😃😃

    It’s great to meet you today!!!!!

    I am one off the Community Champion’s here at Scope.

    Yes I have also got a rare “neurological condition”

    “Wow” what a
    rollercoaster 🎢 ride I have also been on in terms of “medical help”

    Yes I will be very very happy 😃 in helping/supporting you in anyway possible?????

    @steve51 
  • Lanie7Lanie7 Posts: 6Member Listener
    Thank you so much @steve51; I am so sorry you have had a similar experience. It’s very difficult finding people who understand and believe me. Thank you for responding! 
  • steve51steve51 Posts: 5,876Community champion Disability Gamechanger
    Hi @Lanie7

    No probs, please please don’t be sorry the system “is what it is”

    My experience’s go much deeper believe me!!!!!

    Yes the “Hidden Disabilities” are much more difficult to cope with.

    I can certainly say that “I Believe You Whole Heartedly”

    Please come back to me if you need a “Shoulder 2 Cry 😢 On”

    @steve51 

  • thespicemanthespiceman Posts: 5,345Community champion Disability Gamechanger
    Hello @Lanie7   Pleased to meet you welcome.

    Thank you for joining and sharing.  Sorry to hear what you are going through.

    You come to the right place for support, information and friendship.

    I am one of the team of community champions. We guide, advise and help new members who join the community.

    Please can I ask have you contacted the organisation that deals with your condition?

    https://www.arachnoiditis.co.uk.

    If that helps you.

    I know there will be many members of our community be supportive.

    I am my self a Christian and know that using my faith helps and guides my own issues I have.

    Happy to share and care anytime.

    Please have a look around our website. We are friendly, care and share.

    Feel free to join in discussions.

    Please ask if you wish to know anything.  Some one will know a member of our team or a member of our community.

    Please take care.

    @thespiceman


  • Lanie7Lanie7 Posts: 6Member Listener
    Thank [email protected]! You are very kind! Yes I joined several on line groups fir arachnoiditis. After many years I still follow one but no longer active on it. I found all the info I needed, helped many people but now I feel it’s too depressing to be on there all the time. I am trying to move on with more positivity in my life. Sadly the docs are not helpful so now I am on my own medically. But having a relationship with Jesus Christ is my lifeline. Thanks again!
  • AilsAils Posts: 1,141Community champion Disability Gamechanger
    Hi @Lanie7 and welcome to the Community.  It is nice to meet you and thank you for sharing your experience with us.  I have some nerve damage to my left leg so can appreciate how painful this can be and am sorry to hear of your health struggles.  You have come to the right place for sharing/support and to meet new friends.  We are all here for you so if there is anything else you need help/support with then please just ask.  I look forward to seeing you on the Community.  All the best.  :smile:
  • Lanie7Lanie7 Posts: 6Member Listener
  • Lanie7Lanie7 Posts: 6Member Listener
    @Ails I am sorry you have nerve damage as well! I am finding navigating very difficult. How do I access different groups and discussions? Seem to have lost my way a bit! Thank you fir your help! 
  • steve51steve51 Posts: 5,876Community champion Disability Gamechanger
    Hi @Laine7

    Here’s some info for you about getting in & around below.

    https://www.scope.org.uk/online-community-guidelines

    I do hope that this is helpful for you??

    @steve51 
  • Lanie7Lanie7 Posts: 6Member Listener
  • steve51steve51 Posts: 5,876Community champion Disability Gamechanger
    Hi @Laine7

    No Probs it’s my Pleasure 😃😃

    @steve51 
  • AilsAils Posts: 1,141Community champion Disability Gamechanger
    Hi @Laine7 and sorry for the delay in replying to you.  You have been given really good info by @steve51 and I hope you found this useful.  Thanks for your kind words.  Yes, it is difficult nerve damage.  Mine's has came about as a result of my hip replacement so it can be frustrating.  I hope you are well and having a good day.  All the best.  :smile:
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