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!