I will suggest that at the next visit… 
Doesn’t that bring the risk of ending up in the wrong type of hospital ward???
Better meds?
Possibly…
She already thinks I am nuts…
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I will ask her if she can see the bear with the hat… 
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I’ve recently changed rheumys because where I was most appointments were nurse led and seeing as the nurse was not allowed to say anything much and seemed to know little if anything about PsA anyway, that meant I might as well have consulted the post man. She waved a hand at my feet x-rays, on which no report was available, and said “I could say that looks a bit dodgy, and that … and that … but it might worry you.” Then she told me that they’d accidentally heard back that I had scoliosis but yelled at me when I blurted “scoliosis!?” Proper yelled. Because apparently it doesn’t matter if your spine’s a bit bent, though my son tells me Usain Bolt has scoliosis so it probably won’t affect my sprinting career. And indeed I achieved a personal best in running to another rheumy.
I too am on a mission to get my imaging properly interpreted.
If you don’t mind me asking Jon - how do all your issues affect you from a functional ability point of view?
It is a total sham, the doctor cannot or will not look at the images, the radiologist has a number two pencil sticking out of his ear, bored out of his mind, and not even looking at the film. Doctor just reads the bogus report and sends you on your way. I pull the images off, circle the questionable areas and load it on my iPad, shove it in the doctors face and say “what is that?”
Lets see, pain in all my joints, SIJ, spine, feet, hands, elbows etc. Fatigue, brain fog, blured vision. But I still push the envelope and then pay the price by crashing for several hours. Oh ya, insomnia, it is 3:am…
Sybil, hope it is not to bad, the surgery for it looks grusome… Is there exersises you can do?
I assume you can’t work either? It sounds so dreadful for you. I am sorry. Especially as you seem to have to do most of your doctor’s job for her or him. Can’t remember which sex they are! You put my present challenges into perspective.
Sybil, your son is right, an awful lot of people have some curvature of the spine which usually gives them little problems. I think Teresa May has it too. Have you watched how she walks a little hunched over with one hip sticking out a bit. And as we know it doesn’t stop her walking. It’s all that walking that gave her the stupid idea for a general election!!!
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Oh thanks Jon … no, apparently not too bad, well that was the upshot of the nurse’s tirade. I hear it’s quite common. But my view is that I’m 61, someone tells me by the by that I’ve probably had scoliosis forever, surely that merits just 5 minutes … maybe 2 or 3 … of explanation? The spine’s a big deal, after all! But then I rather think you know that!
I kind of prefer Usain Bolt as my scoliosis role model. Plus I bet some medical person has talked our glorious leader through it, somewhere along the line.
Yes I would prefer Usain Bolt too, Sybil! And obviously people talked to ‘our leader’ either too much or just not enough! But please don’t be worrying about your spine and its scolosis, if to date it hasn’t given you any hassle. It most probably won’t now either. But I agree the fact you were told it was there warranted at least 5 minutes discussion!
Poo- I still do some work, but I am living at a retreat, so my work is mellow… My Rheumy is a young female doctor, she is the researcher/hardnose/won’t believe anything patient says kind of doctor. I like that in a way, I wanted to be reassessed, but I figured she would use the existing US reports, not start from scratch with x-rays…
Sybil- that is good that it isn’t that bad, hopefully it will stay that way!
Yeah, like I say it’s just one example of imaging raising many more questions than get answered or even addressed. I’ve always thought I had a ‘good back’, very few aches and pains there till PsA hit me, so I was surprised, that’s all. And I’m sure I tried limbo dancing once with what I thought was aplomb lol!
I’ve been pondering this. I doubt I have visible inflammation in my joints though I guess there has been a lot of discussion here about how difficult it is to get hard & fast info. from imaging. Yet these days I have similar issues to you but on something like a month on, month off basis. The good phases are so good I start thinking about remission but then things change and it’s fatigue that’s the biggest challenge. I can handle a fair bit of pain if I feel fresh and energetic, I guess most of us would say something similar, but being knackered all the time amplifies discomfort.
My rheumy thinks that Humira is still working and I agree with her. Yet she also thinks the disease could be controlled a little better so we’re tinkering with Mtx. On this one I’m not so sure I agree, I actually tend to think this may be as good as it gets, for me anyway. But what stands out in your description is the pain in all your joints … which just seems like a bridge too far to be accepting in the way that I’m inclined to be.
And then, though it pains me to mention it 'cos it’s my personal bugbear … OA … or DISH … well tntlamb once made an awesome post about how all sorts of things happen in joints affected by PsA, and to me that makes so much sense. Even an otherwise useless patient education course I went on made exactly that point.
Nothing really helpful here, I know. But my take is that what I want from a biologic is for it to minimise the disease to a certain level. And the question is when are things good enough? It’s early days for you with Remicade but in your shoes I’d want a bit more from it I think.
Good the work is mellow. Working and/or doing something useful ( as in bringing up kids) always helps.
It sounds like your rheumy probably has you well taped. It always helps if you trust them and can ‘work’ with them. I do hope things improve for you though.