LUPUS UK
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Seen rheumatologist and still undiagnosed

So, I saw the rheumatologist today. To be honest he talked far more than he listened and he didn’t like being asked questions. He’s unwilling to make a diagnosis at this stage. I definitely have a positive ENA and ANA with anti-ro. He’s given me a steroid injection as this helps some people with fatigue. If not we can try the anti-malarial drug (that I can remember the name of) when I see him again in three months time.

I asked about pernicious anemia and the therapeutic trial of B12 I’m on and he said that was between me and the doctor who prescribed it.

So I still don’t know if I have PA although the B12 is helping with some symptoms.

And I don’t know if I have Lupus, Sjögren’s or anything else that is associated with anti-ro.

He reluctantly sent me for kidney tests but only because I raised it.

I mentioned a lack of diagnosis makes it hard with the DWP and he actually said ‘I don’t care about the DWP’ I suppose I only care because how much help I can get is in their hands.

The waiting game is a scary place though isn’t it? And very hard to explain to other people.

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Sounds dreadful Amy - I’m really sorry you saw such an unhelpful guy? Are you stuck with this one do you know or might there be nice rheumies in your hospital who are better listeners perhaps? I’ve just seen the equivalent in a woman GP. Hmmmm! X

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I don’t know tbh. Yes I’ve had a similar experience with a woman GP. I’ve got a nice one now though. The last one said it’s CFS, join a support group! And I had to go private for the B12. Crazy huh!

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I’ve just posted about my lousy experience of the day/ week/month (hopefully). Even with a diagnosis we can trust they can treat us like pests. With positive bloods like yours they can’t dismiss you so it was definitely just his doctor God style. My woman neuro is just like that too!

Monstrous what he said about the DWP of course. But totally unsurprising as these consultants are in the rich, healthy pile and often lack empathy or imagination.

But the DWP don’t actually care about the diagnosis or whether it’s CFS, Sjögren’s, Fibro, RA or Lupus - it’s all about the impact on your mobility and independence. I learnt this very recently the hard way and am now waiting for my PIP appeal tribunal with much dread. X

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Si know it’s frustrating but it can take yrs to get a diagnosis

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I would get in touch with your hospital's PALS and log a complaint about his behaviour. You're entitled to see another consultant.

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