Dropping in to update

Hi all, been a while but so much has been going on. Working, holdays, trips to hospital with kidney infections and endless appointments. Went for my latest rheumy appt and I got one of the new registrars and while I know it is importamt for them to learn, after two years of repeating my history every time I go to arheumy appt I have decided to see the head rheumy privately. It is going to be expensive but at least I won't have waste my whole appt repeating myself and going back to the bs diagnosis of fibromyalgia until I crack it and see the head bloke who tells them I am seroo negative. Aghhhhhhhhh.

Hope things are are going ok for everyone and that the sun is shining where you are.

8 Replies

  • Do you know, this really ticks me off. We pay into the NHS all our working life &............well, you know! I'm just hoping I see my named Rheumy at my next appointment in July otherwise I can see myself following suit & it shouldn't be necessary. At my last appointment I saw an SpR & neither of us (husband attends with me) were happy with the way it went. Amongst many inaccuracies he assumed my joint pain was caused by "just osteoarthritis" & a recent UTI, when I know damn well it wasn't. My named Rheumy (who I've only seen once) fully appreciates whilst I present few visible signs of RD my test results show a very different story. I also had to go through my history again & a few details were incorrectly noted (cc'd letter to my GP confirmed) including when I was first diagnosed, ie he was informed 2008 but 2002 was written, the year when we went to live in Spain (he seemed more interested in the treatment I received there & what I thought of their health service compared to UK), his DAS score was totally out as he wrote I had a tender joint count of 1 which according to my reactions would have put me at least into the 10's. His VAS score was 25 (considered mild pain), again it certainly wasn't & although not in the middle of a flare at the time I do know I was not experiencing mild pain on the day, nor have I for some time previous to the appointment. His parting words were to see my GP if I had any problems. A General Practitioner is not a Rheumatoid Specialist so why should he be expected to see me regarding something he doesn't have specific knowledge about?! Grrrr. I tell you if I only get to see my Rheumy once a year I'll be heading the same route as you & it's just not right. I appreciate they have to learn but maybe Spain has a better plan as they train alongside the consultant (the SrR leads the meet & the consultant looks on & advises if necessary) & not "let loose" & left to their own devices. I saw my consultant 3 monthly in Spain & it makes an obvious difference to treatment if you see the same one more regularly. I was certainly far better controlled seeing him more regularly than I am now.

    Rant over, sorry to go on but reading your experience opened a can of worms!

  • I live in Australia and after 2 years of this, only seeing real one maybe once a year i can't take it any more. Seriously hectold me to exercise. I just looked at him and said you must be joking. My bloods are sero neg but high inflammation. Real rheumy told me sero neg inflammatory arthritis this is the 3rd registrar to say fibro and you need to exercise. I can hardly walk. I wasnt waiting for the next bs thing that I must also be depressed.

  • Sounds as though you're being wise seeing the Head Man, considering. It's just a pity you have to pay to do so. I'll be asking my GP for referral to another Specialist if I don't see my Rheumy at my next appointment as if I don't it'll be 18 months by the appointment after that (assuming I see her then!).

  • Don't get an option here it is pot luck who you get at the hospital

  • hi i lived on the Gold Coast and went to a private rhuemy every three months and medicare refunded me about 70% of cost, that way I saw the same person each time. cheers

  • My sister goes to the same one and you don't get much back from medicare. I am prepared to pay after 2 years of registrars

  • fair enough, i found the one on the Gold Coast better than in NZ, at least he listened to me, here in NZ I find it a waste of time going to rhuemy here, my doctor is better than rhuemy. wishing you well.

  • I have seen this one at the hospital a few times and am actually under him but have only seen him 3 times in 2 years at least if i pay i see him. Sorry that you sre not getting the help you need it is so hard to find someone that you can work with. I hope you can soon

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