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

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
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
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
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
SCOPE Volunteer Award Engaging Communities 2019
Mental Health advice, guidance and information to all members
Nutrition, Diet, Wellbeing, Addiction.
Recipes
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
No Probs it’s my Pleasure 😃😃
@steve51