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Trying to get a diagnosis for an inflammatory arthritis

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Rayofhope
Rayofhope Community member Posts: 6 Listener
edited August 2019 in Everyday life
Hi
I have 3 children and 2 grandchildren (although far too young to be a grandmother).  I have been in the throes of trying to get a diagnosis for an inflammatory arthritis for about 2 years. 
I have degenerative disc disease, have had a lumbar fusion 5 years ago and thought that was the end of it to be honest but now on worse than ever. 
An osteopath/doctor told me 7 years ago that I had Ankylosing spondylitis and he said I would hav e trouble proving it. 
He wasnt wrong there. 

I now under a Rheumatologist as my inflammatory markers are raised, I'm anaemic too, have had a positive Rheumatoid factor also. 
 But still havent had a confirmed diagnosis so stuck on steroids all the time. 

Nice to be here. Thanks for listening. 

Comments

  • Dithreabhach
    Dithreabhach Community member Posts: 7 Connected
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    Hi @Rayohope welcome to the community. People here are very friendly and helpful.
  • Rayofhope
    Rayofhope Community member Posts: 6 Listener
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    Thank you Dithreabhach.
    Nice to meet you too. ?
  • thespiceman
    thespiceman Community member Posts: 6,377 Championing
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    Hello @Rayofhope   Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear this. You not alone many members can identify what you are going through.

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

    Please have a look around our website. We are friendly, feel free to join in discussions.

    Please if we can help with anything please ask. Some one will know a member of our team or a member of our community.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Championing
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    Hi there! Sorry to hear of your health issues. I had trouble getting a full diagnosis. They kept getting it wrong.
    This site has helped.
    Best wishes x
  • Adrian_Scope
    Adrian_Scope Posts: 11,392 Scope online community team
    edited August 2019
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    Glad you’ve joined us @Rayofhope. I hope we can give you plenty of support.
    What’s the next step for you?
    Community Manager
    Scope
  • Rayofhope
    Rayofhope Community member Posts: 6 Listener
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    Hi Adrian and all
    I honestly dont know what to do next.

    I have just had an MRI appointment through for lumbar, sacral, SIJ and Thoracic. I am hoping this will show the inflammation they think it will. 

    I am deteriorating quite quickly at the moment as I am currently off the steroids until the MRI at the end of this month. 

    My husband says I should get the doctor to sign me off work as we are flat broke since I lost.my job.  The children just dont understand. He said let's face it, what can you do! Which was very upsetting for me to hear but in truth is right. 
    I'm struggling to walk at the moment and using crutches is playing havoc with my wrists. I just cant win. 

    I dont know what to do. I dont know what help we are entitled too. I get standard rate PIP anyway and cant see them upping that. I dont know if I am entitled to some sort of mobility aid although I really dont want to use one. I'm scared, feeling very useless! 

    Any suggestions would be most.welcome. 

    Thank you 
    Janine 
  • April2018mom
    April2018mom Posts: 2,882 Championing
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    Have you looked at DLF? They provide all types of adaptive equipment to people including kids too https://www.livingmadeeasy.org.uk/
    Take a look. Perhaps you can find something?
  • julesthomo
    julesthomo Community member Posts: 4 Listener
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    Dont give up hope, I was passed from pillar to post, seen rheumatologists, neurologists, orthopedics, I've probably been through every department at our hospital and I was finally given a diagnosis in July. My problems with my joints started in my 20s and in early 30s now. I have a raised rheumatoid factor of 59 which was always brushed off until I met with my recent rheumatologist, I've been diagnosed with palindromic rheumatism, fibromyalgia and hyper mobility syndrome. I got to the point where the hospital had me believing it was all in my head but you know your own body. Keep fighting you will get there in the end 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,581 Championing
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    Hi @Rayofhope and a very warm welcome to the community! I am sorry to hear you are struggling to get a diagnosis and that it has become a struggle financially. Have you ever had a Needs Assessment? They may be able to provide more support or aids which could make things a little easier. You are able to self- refer.

    How are you doing today?
    Scope

  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Championing
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    Hi again, I hope you do take up the advice of April and Chloe in getting assessments for both care and aids to help you get safely around.

    I`ve had these a few times and received lots of very good help.

    xxx
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