Update from my appointment,if you're interested

Hello, if you've read my previous post about preparation for my appointment maybe you'd like to hear how it went.

I was very nervous as after previous appointments had always felt angry and/or upset. I had written down 3 pages of things like descriptions of pain where and when, what helps and what makes things worse plus anything else I wanted to get off my chest and I did a drawing of my hands and feet where I highlighted which parts hurt most with 2 colours.

When I went in my fears of not being taken serious again were put at ease quickly. This doctor clearly was not some registrar filling in for a consultant, he was the real deal. He was very friendly. Read all my scribbling and asked questions before inspecting my hands, feet, wrists, elbows and neck. He also looked at my mums hands ( she is visiting and came with me as support and she has similar problems). He says he is quite certain on a diagnosis after this but just to exclude 2 very rare possibilities he ordered an MRI of my hands. He thinks I have 'nodular osteoarthritis' which is a rare form of OA ( about 1% of people with OA have this). He said the bad news is that it's just as painful as RA and there's no cure but the good news is, there's no need for me to take strong meds to manage it. He explained that it goes in waves/flares up and down with the 'normal' level being an upward trajectory. He says my trajectory is so far looking likely to be not too bad and I should be able to just deal with flare ups with pain killers when needed. He also wants me to see a podiatrist to maybe get insoles as the pain in my big toes makes me walk on the outside of my feet too much and this might be corrected.

Although it's obviously not all wonderful I am however deeply grateful that I got a relatively firm diagnosis and was treated with respect and taken seriously. I went out of the consultation happier then I've felt before after an appointment ever. I feel I'm in good hands. I might now no longer fit into your group as I don't have RA but you have all helped me deal with this for the past 2 years and I would like to say thank you!

I will keep looking here as I found lots of helpful advise that probably still applies.

Thanks for reading and have a good and hopefully pain free week ahead!

10 Replies

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  • Glad you ve got it all sorted good luck for the future xx

  • It makes so much difference when someone actually listens to you doesn't it.

  • Just because this is a site for RA they cover all forms of Arthur so there is no need for you to leave. You add a different perspective to what we all suffer and i am sure someone on here will need your expertise darling. I am happy you got a proper diagnosis and now you can get on with coming to terms with Arthur. There are still lots to learn about Arthur and your experience will help others.xxxxxx

  • It makes all the difference in the world when you find a doctor(s) that HEAR you. Good luck and like previously said ...I too hope you stay. I have Raynaud's, RA, Interstitial Lubb Disease and now Scleroderma and I learn so much from everyone. On on those days when I'm sitting on my pitty pot...I find Hope!!!

  • So glad you got an amswer . Do stay here for support , pain is pain and we all understand that here xx

  • am glad u got feedback this time - and orthotics are great if they are correct ie not off theshelf. why sd u leave the site - u may have info, ideas etc to share, and arthritis is what it is. i still can't understand how people can ha RA,OA, PsA etcetc at the same time in one body.... best wishes

  • I'm pleased you had a good appointment, it makes such a difference when your issues are addressed properly. Are you sure it was nodular OA he diagnosed not nodal OA Alex? Nodal OA is normally passed from mum to daughter & usually happens around the time of the menopause, possibly why he checked your mum's hands too? The good thing, if it is this, is once the painful nodes have stopped growing (aka Heberden's nodes if the DIP joints are affected or Bouchard's nodes if it's the PIP joints) they become less painful I've found so hopefully long term though they may look unsightly they're not really bothersome, apart from affecting your grip that is. Often if you're diagnosed with nodal OA the knees also become affected so there's that joy we've to look forward to, not!

    No need for goodbyes, there are lots of us here with RD & OA but also some with OA & not RD too.

  • Hello and thanks for your reply (and everyone elses too!). I have no intention of leaving, just thought I keep in the background… He did write "nodular Osteoarthritis" on my notepad so that is what I looked for but I cannot find much for that term either and wondered if it is the same as nodal maybe? He did say it was passed from mother to daughter and also that the pain might become better once the bumpy bits have stopped growing. I don"t know if I have Heberden's nodes as well as Bouchard's as the pain is more at the base of the fingers where they meet the palm of my hands rather than DIP or PIP joints. But on a few fingers those bits have become a bit bumpier so it might be both. I read that the knee joints are likely to be affected sooner or later too and not looking forward to this, but as I said, on the whole it was a better outcome than I had dared to hope for.

    Thank you all for your continued help and the warm embrace into the community, I appreciate it!

  • I'm so happy for you. Uncertainty, not being listened to and unanswered questions play a role in causing fatigue. All the very best and be kind to yourself!

  • I am SO glad you found someone that takes you seriously. Honestly sometimes I think that is half of the fight...

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