Okay folks, I’ve got some good news. Apparently PsA ‘never’ affects the spine. It ‘never’ affects the thumb joint either. Or so this nurse practitioner I saw today tells me.
As it happens I do have back pain which I tend to attribute to wear & tear, which is why the subject of the spine came up. However the lady did fish out a (clear) chest x-ray which was taken after exposure to TB last year on which my scoliosis had been flagged up. Scoliosis? Eh? But apparently that wasn’t worth talking about either, apart from the comment that I must have had it a long time.
Chest pain? No idea. But she did come up with the suggestion that I might like to stop Mtx in case that was causing it. Or, another brilliant idea, I could stop Humira because “who knows? it might just be causing the pain and breathlessness”. By this point both me & my husband found that without thinking about it we were putting on our coats.
Oh, and having had x-rays of my feet at my last appointment with the rheumatologist (who did seem good) in October, I was interested to hear the results. Except that there aren’t any. Nobody wrote up the report and therefore nobody will now. Apparently “it happens sometimes”.
The only concession I wrung out of her was that I’m going to get an ultrasound of my thumb to see if there is any inflammation. But that will be sometime in the future, assuming of course anybody goes as far as to make the appointment.
There was a physical examination you might say. She tentatively prodded a few bits of me through my clothes and I didn’t scream so that’s all right then. I pointed out that even when some joints were swollen up like footballs palpation didn’t hurt but I don’t think she heard me. She mentioned that she was tired and couldn’t really think straight.
I’m meant to see this person again in 3 months. No I’m not. I’m going to see about a referral to the centre of excellence in Bath. I’ve got a new symptom: steam coming out of ears. Anyone else have that problem?
Good lord, you have every right to be fuming about that one. Especially the first portion. I mean, correct me if I’m wrong, but PsA is under the Spondylitis umbrella, which can affect the spine, right?
I especially like that she was tired and couldn’t think straight. An appropriate response would have been along the lines of “I’m tired all the damned time, but still manage to focus on important things.”
I’d be much harsher if I was elsewhere, so I’ll just end by calling her a twit.
Thank you Dilorenzo, that helps, truly it does. I didn’t post immediately I got home, I went for a long-ish walk and reflected on whether I was being silly / too demanding but I don’t think I am. I know the NHS is in trouble. And I know the squeaky door gets the most oil. It’s just a shame and I don’t feel like I’m in safe hands as I was with last rheumy dept. (I’ve moved to a new area recently).
Wait what…?!.. I don’t even know how to reply to this… why don’t they just call you on the phone for 2 minutes to tell you how your feeling instead of making you come over and not even fully look at you…
Just infuriating - follow your instincts and go elsewhere - no point waiting months to see people like this … Maybe an email setting out your experience to let the rheumatologist know? Might save other people a similar experience
I thought of you, I think you’ve had surgery on your thumb perhaps? When I had first big flare (and it was a whopper), my thumb joint, where it joins wrist, swelled up alongside knees and other bits & pieces. Because of that synchronicity I’m averse to being told it is ‘just’ OA, regardless of what sort of damage shows up. That was the only argument that got me anywhere.
Thanks Golfnut. I’m going to phone up tomorrow to ask for a radiologist to interpret the x-rays. And I do agree that I probably should report back about the whole appointment as factually as possible too.
When I was first referred to the hospital with PsA it was a horrible experience. The consultant was a rather foul woman who refused to answer any of my questions (it was my job to answer them, not ask them, I was told!), basically insulted me for half an hour, and told me my liver was pretty screwed. Thankfully, my liver isn’t (or wasn’t last time we checked), it was just being affected by bipolar meds. But I was too fat, too pale, told I had a hump on my back, was bandy-legged, and didn’t walk properly. For once in my life I wished I was straight, as she seemed SUCH a catch! Anyway, feeling pretty crappy after all that, I went back to my GP and she agreed to write to the hospital and get me transferred to another consultant. That happened easily enough, so it can be done if you’re not happy with the service you are getting.
Well I understand that! How dare you walk into her office with a pale face!! And it’s incredibly rude to make your liver not work properly before seeing her…
I have trouble to understand that people like that exist… And they look at themselves in the mirror and honestly think they are good people?.. Why would you want to be a doctor if you don’t want to deal with those annoying sick patients…
I checked out a hand diagram & think it’s my basal joint in fact. I reckon it’s in pretty bad shape and she didn’t disagree, there are some old hand x-rays which show as much and it has worsened since, but she just banged on about how it couldn’t be PsA. Once the great ‘OA or PsA?’ debate commences I lose the will to live, been there before and I know it bodes ill, I basically just wanted it assessed because it doesn’t work properly anymore and is flipping painful. May I ask, was your damage OA style? Or PsA erosions?
Hi darinfan. My PsA journey started badly too. With encouragement from this site I sought a second opinion (there was a 6 month wait to see the new consultant) but that heralded a much, much better phase. I agree I have to get on my bike … again.
Yeah, she was quite rude to add insult to injury, but I don’t mind that so much, I might tolerate a vile but effective, very clued-up practitioner these days, at least in-between appointments there’s the knowledge that someone with a brain is in charge. And the consultant did seem very clued-up. My guess is that her caseload is ridiculous and the nurses do the work of checking out whether patients are still alive and can still walk.
Dismal is the perfect word. Terrible for you…such ignorance by someone who should not be ignorant. In the face of such denial it is hard to hang on to what you know sometimes. I hope you are able to remind yourself of what you know. PS lately the spot between my ears has a constant kettle on the boil…steamy
Sybil, I’m so sorry and dissapointed you had to deal with that.
PsA doesn’t affect the Spine? ROFL!!! Oh hang on, I can’t, my first flare in years is in the cervical joints in my neck!
Oh, that deterioration in your thumb is “just” OA - yes, my significant deterioration in my facet joints in my spine was “just” OA due to aging. At age 36.
But more importantly, did she miss the bit in the last decade about OA not being normal wear and tear anyway? That we might still be researching exactly what it is, but it seems inflammatory too?
Please do go somewhere else. She may well have been tired and been having a bad day (or for all I know been diagnosed with cancer), but it is not ok for her to treat your disease as her inconvenience - you deserve better.
Thanks MacMac. It is hard to hang on to what you know. The soul-searching I did was around ‘am I seeing more to the disease than there is? Do I want it to be more complicated than it actually is? Have I just lost the plot? etc. etc.’ The answer’s ‘no’ because I don’t exactly sit around feeling sorry for myself, I know and really enjoy the fact that my PsA often lets up, I sift and cross-reference all the key facts my little brain can handle. I don’t go to the doctor unless I’m sure I need to either, on account of how I cost the NHS enough already. If there’s anything else I can do to keep it real then I will. Starting with get the hell out of that hospital!
Good luck with the ear problem best thing ever is when treatment’s in hand and you’ve got a doctor / rheumy dept. that inspires confidence. At least I know that is doable.
It’s just bonkers Jen. The scoliosis thing foxed me. It was a case of ‘you’ve got scoliosis, had it most your life probably, get over it’. Yeah, I’m sure I will but you just told me a millisecond ago! I could see the curve on the x-ray but wasn’t told how big it is or which vertebrae it affects. My husband’s a good 'un. On the way out he just said ‘Bath Clinic’.
The OA issue … oh boy is that an obstacle. I managed to climb over that one as she’s booking an ultrasound, but I’ve had a lot of practice.
Interestingly, mine was none of the above. It was due to PsA, but not erosions. The whole joint destabilized. The left one has done the same but is still functioning acceptably at this point. Because the joint no longer moves correctly it will develop OA, but at this point I’m likely going to wait until it goes there. I have hand exercises that I can do to keep the joint stronger so that it tends to stay more in place. We all know that PsA damage can lead to OA. That’s more or less what I’m waiting on with the left hand.
best thing ever is when treatment’s in hand and you’ve got a doctor / rheumy dept. that inspires confidence. At least I know that is doable.