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Trying to get a diagnosis for an inflammatory arthritis

RayofhopeRayofhope Member Posts: 6 Listener
edited August 2019 in Disabled people
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. 

Replies

  • DithreabhachDithreabhach Member Posts: 7 Connected
    Hi @Rayohope welcome to the community. People here are very friendly and helpful.
  • RayofhopeRayofhope Member Posts: 6 Listener
    Thank you Dithreabhach.
    Nice to meet you too. 😊
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    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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  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    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_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    edited August 2019
    Glad you’ve joined us @Rayofhope. I hope we can give you plenty of support.
    What’s the next step for you?
    Senior Community Partner
    Scope
  • RayofhopeRayofhope Member Posts: 6 Listener
    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 
  • April2018momApril2018mom Posts: 2,869 Member
    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?
  • julesthomojulesthomo Member Posts: 4 Listener
    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_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    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

  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    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
  • CressidaCressida Member Posts: 827 Pioneering
    @Rayofhope please ask your rheumatologist for a referral to their OT team. They will suggest and supply any aids which might benefit and ways to manage every day life. As a RA and now OA sufferer of 30 years best advice I can give is pace yourself. Rest when your joints are flaring and don't try and do everything when you get a slight remission. Have you tried ice or heat on inflamed joints? I use a wax bath on my hands when they are really swollen and painful. Unfortunately even after diagnosis drug regimes are trial and error. I'm now on biologics and methotrexate but to qualify you have to have to have been through a lot of drugs. Nowadays treatments are so much better so stay strong you will get there. Also ask to see one of their specialist nurse team. Mine is fantastic and has helped me so much.
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