LUPUS UK
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Disappointing Rheumy Appointment

Went for my follow up appointment today, had loads to get through as until 3 months ago I hadn’t heard of lupus, started on hydroxy and was getting the results of the 3 MRI’s I had last week (pelvis/back/brain).

I’d taken a health timeline right from childhood and pictures of my malar rash and Raynaud’s, so you could say I was pretty loaded and ready...

The doctor barely looked at any of it and even said I didn’t have enough markers at this stage?!

I argued the point by saying if you ACTUALLY read what I’ve just given you, I have at least 6 out of the 11 criteria markers.

I’m continuing on the hydroxy but honestly, I was so upset at his attitude to just poo poo it all that I was nearly in tears.

I ended up going back to the reception desk and asking them to put my spare copy of the health timeline in my file because I wouldn’t be surprised if he put it in the bin as soon as I left!

Part of me thinks, well you’re on the Meds now anyway and I know it can take ages to get a diagnosis and part of me is so angry and frustrated with the way he was, I feel like asking to transfer or pay for a private consultation!

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Uggh. Yes, it's tough after you have invested so much in these specialist appointments - and especially when you have to wait months to get them - when the medic is not interested in hearing your story.

It seems to happen all too often. I suspect more so at first appointments, as the rheumys seem to have a set procedure and questions and don't want us patients diverting them with our opinions and questions....

So what did s/he conclude - what's the plan for management and review now? x

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I have multiple markers but it seems like there is a higher level benchmark that tips the diagnosis over.

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Hi whisperit

MRI in brain was clear, back one showed OA, which is what I expected, had bloods taken and back in 4-6 months.

Initially when I said I’d had some visual disturbances he wanted to take me off the hydroxy, but when I said I’d seen an improvement (stabbing pains in hands/arms has calmed down to give me a few solid nights sleep) and that to stop so early when I’m at the cusp of getting the benefits from it (3 months) would be a step backwards, he went off to speak to the head consultant who agreed with me that he was being over cautious and for me to carry on with the hydroxy and naproxen.

I just feel I was just a number he needed to tick off his list and didn’t really look at everything I’d spent a lot of time pulling together in order to actually help them?!

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Don't be too upset...I would be quite impressed that a Rheumy was bothering to do his own research on me! If you think about it, this doctor probably had seen or was going to see loads of patients that day & his bedside manner had up & gone by the time you saw him!

When I moved location I had been with my previous rheumy for seven years & I was well settled on a drug regime, but my present Rheumy took a complete new history inc blood tests & scans.......he didn't rely on the notes of my previous Rheumy.....who in fact was a very well thought of Professorof Rheumatology......so it sounds as if you are being treated by a very conscientious doctor.

Wait & few months & see how your treatment pans out....if it's not to your satisfaction...change rheumies.......sadly, we all have to take responsibility for our own health these days.

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Hi Llh

Sorry about your disappointing Rheumy appt. you did the right thing making sure your health timeline makes it to your notes. Very important!. It's hard when you invest so much into these appt's and they don't deliver in quite the way we expected!. It sounds to me that you saw a registrar as he had to go ask the consultant!. This is never satisfactory and would explain why he didn't want your notes. Glad your tests were OK and your staying on Hydroxy. When you go next time make sure you see your consultant, you've done your bit for training now and can ask to see him when in clinic.!.X

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Hi Misty

Yes, I think next time I will have to be pushy to see the consultant next time, I’ve had a look at the back MRI results last night because the whole experience was playing on my mind, he told me it was OA (wear and tear) but reading it (if I’ve got it right) there’s a lot more damage there than he’s told me, nothing to do with Lupus but he seems to have just washed over it, going for physio on Monday so will get some advise..

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Glad your going to physio on Monday Llh . They'll be able to interpret the scan results , it helps them to help you!. It can take a while for us to process these consultations , it goes round and round our heads and given time will fade!. X

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I'm so sorry to read this as I posted about a very similar experience with my Rheumatologist only last week! Although diagnosed 4 years ago I feel as if I'm back at the beginning with a Rheumatologist who is completely disinterested and dismissive and won't even look at my photos or my list of symptoms. I called my post "I hate my Rheumatologist". Good luck and let us know how you get on. Sending hugs. x

It might be worth telling us where you are as there may be someone nearby who can recommend another Rheumatologist in your area.

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Hi, The previous young doctor was completely on the ball, she’s the one who mentioned Lupus and caused what I see as a revelation, but she’s left the hospital!

I’m in north west london, if it comes to it I will be asking to go to St Thomas’s or St George’s, but I will sit tight for the minute, hugs gratefully received.x

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totally understand where your coming from i have lupus {sle} hadnt been to hsptl for 6 years was under my gp and managing with strong painnkillers , then went back to rheumotoligy my doc was completely different wasnt happy sent me home with you can get this amazon dvd , dr lambs thai chi for people with arthiritis what a phob off!!!!!!!! she wasnt very nice and told me i wouldnt die i refused to see her again now waiting to see another consuitant she doesnt know how i feel so rushed no one cares any more sorry for the rant lol im also in the menopuse 5 years and am bringing up my 10year old grandaughter on my own.

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