Help please - preparing for an appointment

Good morning all,

I hope you will be able to give some advice. I will have to start by giving you a bit of a longer story to be able to see where I'm coming from, please bear with me though.

Around two years ago I went to a rheumatologist privately as I was told it would take very long to be seen on the NHS. I saw a specialist who did some test and told me she suspected seri-negative rheumatoid arthritis and gave me some leaflets as well as the advice to go through the NHS as the long term care would be better as there were nurses and better continuity there. She also works part time for the NHS.

I did that and was actually told I'd be under her when I first received appointments. So far I have never seen her again. I saw different registrars, none of which were named on the appointment letters. The last 2 times I saw I guy that I seriously considered complaining about but didn't in the end.

In the beginning of my journey I was given hcq but had to stop it after 8 weeks as I felt very dizzy and nauseous all the time and it was not showing any effects on the arthritis although I am aware that it takes longer to take effect.

I had more blood tests and an MRI as well as ultrasounds of my joints ( mainly fingers, wrists and feet but MRI also included my lower back). I was given conflicting information about the results though. The radiologist said when he did the ultrasound that he could see signs of osteoarthritis as well as deformation that were indicative of inflammatory arthritis. But every time I was in hospital for my appointments it was when I had been rested and feeling quite well (just after 6 weeks off work and on holiday for example). When I mentioned this to the consultant I was told this didn't matter. At my last appointment in September last year the registrar wanted to discharge me saying I didn't have anything but osteoarthritis.

I wasn't happy with this and got a "concession " that I would be reviewed after 6 months.

Since then I heard nothing. A couple of weeks ago I saw my GP and he asked obout my joints. When I told him what had happened and showed him my right hand where I can no longer bend my index finger past half way he said he would chase it for me. On Saturday I got a call from hospital. A nice lady said she wasn't sure how but my appointment had been cancelled and the rescheduleing somehow didn't happen. She was sorry and was calling everyone that had been affected to make new appointments. I got one for this coming Saturday with an apparently senior consultant (not my initial one).

Now my question(s), how do I best prepare for this so everything gets covered? I already thought to write down what hurts and when and pain levels ( any advice on that? Never done this). Is there anything else I should consider doing/saying? I'm feeling somehow lucky that my pain and symptoms like stiffness are on the up due to weather so I can maybe finally get proper results? Forgot to say, I was told before that I didn't have inflammation because my fingers weren't hot or swollen. But they certainly felt hotter than normal to me and swellings don't show mich because my fingers are quite slender and it's only visible when it's on one side only and you have direct contrast, even then it's not majorly visible.

Sorry for rambling, I would really appreciate any help. Thank you!

6 Replies

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  • Put in a search for first appointment on here as this question has been asked lots of times and you will get lots of useful info.

    Basically write a record of your symptoms and signs. When you had swollen/painful joints. How long the stiffness lasts in the morning. Whether the pain keeps you awake. What makes it better or worse. What treatment you have had and what difference has it made. Write it all down concisely and some consultants would like to see the record so have two copies so that you can keep one. Write a separate list of questions you would like answered.

    Take someone else with you if you can - two people remember better than one. And check before you leave that the questions are answered or that there isn't an answer yet (commonly the situation). Reflect back to the doctor what you think he/she has said to check that what you heard was what was intended - I often find I have misunderstood.

    Do lots of deep slow breathing so that you are not too anxious and can concentrate on what is happening.

  • Thank you so much for your detailed reply. I will look into the search facility better and do as you suggested!

  • Hi Eisbaerin,

    Lots of useful tips from oldtimer already but do have a look at our 'Inflammatory Arthritis information pathway' online - nras.org.uk/the-inflammator... Step 3 is all about your visit consultant appointment and has lots of information about how to prepare and what the next steps are.

    If you need any information, either before or after your appointment on Saturday, please do give the Helpline a ring on 0800 298 7650 or email helpline@nras.org.uk

    Really hope the appointment goes well.

    Kind regards

    Emma-NRAS

  • Thank you very much for your reply Emma! I will do this as well.

    Much appreciated!

  • above all do not play down your discomfort / pain - 4get that 'i can manage' facade. i did that 4 far too long and regret it now. good luck x

  • I have very slender fingers and toes as well. I bring in my wedding ring that I cannot put on due to the swelling. My fingers and hands don't " look" swollen but they are. Once they see me trying to put it on they finally believe me. I hope this helps. I would also take notes and activities that you do. At the very least it will let you stay on point during your appointment.

    Hope it goes well,

    Lisa

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