New member - Help/advice please!

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Chip_peeps71
Chip_peeps71 Member Posts: 14
edited 28. Nov 2023, 14:09 in Living with arthritis

Hello - I'd appreciate any advice about seeing a rheumatologist privately. I live in Cardiff, South Wales. I've hit so many walls trying to get a diagnosis via the NHS during the past few years. I've been referred to several specialists and nobody seems to be able to give me a diagnosis. My symptoms have worsened considerably in the past 6 weeks and I'm getting desperate. Many thanks.

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  • SharminB
    SharminB Moderator Posts: 90
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    Hi @Chip_peeps71

    Welcome and thank you for you joining our online community :)

    You might find Private Healthcare Information Network (PHIN) useful to look for a private rheumatologist. The website provides a directory of specialists that may be available in your area and the costs etc. The link for the website is below.

    https://www.phin.org.uk/

    Best wishes,


    Sharmin - Mod

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • stickywicket
    stickywicket Member Posts: 27,715
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    If you've already seen severàl specialists I'd personally be cautious about spending money on a private rheumatologist. You say you can't get a diagnosis. Do you mean of anything or of an inflammatory form of arthritis? Sorry, I don't mean to be intrusive. No need to answer that. I just meànt for you to think about it. If you've read up well on arthritis of all kinds (plenty of info on here) and feel that's what you have then go for it. Is there any inflammatory arthritis in your family? Do you get morning stiffness? Does your GP think you might have an inflammatory arthritis? Have you had any x-rays/blood tests?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Chip_peeps71
    Chip_peeps71 Member Posts: 14
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    Hi, thank you for your advice.

    For background, I've been poorly on and off for the past 5 years. My formal diagnosis atm is morphea and lymphocytic mastopathy and have recently been tested for scleroderma and my bloods have come back as 'essentially normal' (there is no history of any of these conditions in my family). I had shingles back in October which seems to have triggered the current symptoms I have of joint pain which occurs bilaterally and predominantly in my hands/wrists/fingers, shoulders, knees, feet/ankles/toes. I'm taking a combination of paracetamol and ibuprofen to manage the pain and inflammation.

    From the research I've done so far I'm pretty sure I have some form of arthritis. I just need confirmation so I can move on and get the right treatment - I have a physically demanding job and can't work atm. Since my last post I've booked to see a rheumatologist privately, unfortunately the earliest appointment I could get was the end of February.

  • stickywicket
    stickywicket Member Posts: 27,715
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    I had to google your diagnosis as I've never heard of either. It does sound as if you might well have something autoimmune going on but, I guess, not necessarily arthritis. Whatever it is I hope you can get on the right meds asap.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Chip_peeps71
    Chip_peeps71 Member Posts: 14
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    An ultrasound of my hands and wrists has confirmed synovitis. My rheumatologist has called me into clinic to see him on Friday to discuss what's next - I'm feeling quite low at the moment.

  • stickywicket
    stickywicket Member Posts: 27,715
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    Synovitis can be caused by several things one of which is inflammatory arthritis. Chin up, you might get some answers now.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Chip_peeps71
    Chip_peeps71 Member Posts: 14
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    Inflammatory arthritis is the official diagnosis - I've been prescribed a course of steroids (Prednisolone) and Hydroxychloroquine (which isn't currently available where I live due to manufacturers supply problems 🤦🏻‍♀️ - 🤞it'll be resolved soon).

    Onwards and upwards....

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