Advice on talking to rheumatologist : Since... - LUPUS UK

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Advice on talking to rheumatologist

Hattifattener profile image
11 Replies

Since February, I’ve been suffering with weird blisters on my fingers, was initially treated for shingles, then raynauds, referred to rheumatologist after positive ANA test and with rash on face. Rheumatologist was quite dismissive, “just” raynauds, and my joints can’t possibly hurt because my hands aren’t swollen (any more). He only saw me wearing a mask, so didn’t examine the rash. He has taken more bloods, but I’m worried that unless something significant shows up, he’ll just insist nothing is wrong. I mean obviously I don’t want to be ill, (who does?) but I know I’m not right, and would like to be taken seriously!

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Hattifattener
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11 Replies
Oshgosh profile image
Oshgosh

I don’t have the conditions you have,so can’t advise on questions.You do need to write down your questions,

Take paper and spare pens.

I take Zebra pens,they clip to my top,so I don’t lose them in my nervousness.

If you can’t get any further ,perhaps ask your GP if he’ll refer you to a different rheumatologist.

Ihope all goes well.

Hattifattener profile image
Hattifattener in reply to Oshgosh

Thanks so much for replying. It’s so difficult, I just want to be taken seriously. My GP was so thorough and so understanding, then the rheumy sounding like he couldn’t be less interested threw me.

Spanielmadlady profile image
Spanielmadlady

Hi.it can take up to 6 years to get a diagnosis. Some rheumatologists wont see you if you dont have a positive DS-DNA blood tests as a percentage of the population have positive ANA without having illness.my hands dont swell but I do get pain.it took awhile to convince my rheumatologist but I'm now prescribed pregabalin. You've just got to keep pushing until you get there. You can request a second opinion and ask for full bloods inc ANA DS-DNA and urine if they haven't been done this time.bloods can also flit between positive and negative. keep a symptom diary and photos of rashes and swelling. Good luck....its a long rocky road ...we've been along it xx

Hattifattener profile image
Hattifattener in reply to Spanielmadlady

Thank you that’s so helpful. My GP had been so proactive and seemed so sure that the combo of symptoms and test results indicated some kind of connective tissue disorder and wanted it dealt with quickly, that I guess I was just thrown by the manner of the rheumatologist. So it’s good to keep this in mind, and try not to be impatient. And be grateful that the GP is interested and proactive, because I know that’s not always the case!!! And maybe it’s nothing. But it still hurts. 🙃

KayHimm profile image
KayHimm in reply to Hattifattener

What exactly did the rheumatologist say? Did he not see the rash because of Covid precautions?

I think you may have thought he was being dismissive when he was noting whether there were signs of inflammatory on exam. It is important to let him interpret the blood test.

Do you have photos of the rash?

Hope you get answers soon.

K

Hattifattener profile image
Hattifattener in reply to KayHimm

Thank you, that’s a good point. I think he was just focused on getting more bloods done, and then taking it from there.

I don’t know why he didn’t look at my face, I presume Covid, but also maybe not relevant until he knows what the bloods say. I admit I can be overly sensitive. However, his solution for Raynauds was to say that “it’s summer now” and while it was a sunny day when I saw him, it has been snowing here this week.

What I have learnt already from being here is that waiting 4 months for an answer is nothing. 😀 And that helps. Thank you.

KayHimm profile image
KayHimm in reply to Hattifattener

I agree it’s not a good response to tell you « it’s summer now. » I think he is trying to assure you it is mild Raynaud’s and not something more serious like vasculitis.

If it was before both of you were vaccinated that he saw you, it was more important to keep both of you alive than see the rash. My brother was exposed to Covid during a neuro exam for Parkinson’s when he took off his mask for a minute so the resident could see a tremor. He got a call to get tested for Covid because the doctor had tested positive.

Yes, important to know our feelings of being dismissed by a doctor are our feelings. They could be protecting us too.

Your GP had probably recorded the specifics of your rash.

One important thing to remember is that rheumatologists do not want to give a lupus diagnosis. We patients want an answer. They treat a range of patients every day, some of whom having failing kidneys and serious heart problems. They want to reassure us we don’t have lupus.

A rheumatologist in New York describes a big part of her day as reassuring young women sent to her with positive ANA that they don’t have lupus. Those women may, in fact, feel dismissed.

Hang in there. Know you will get the thorough evaluation you deserve.

Xk

Spanielmadlady profile image
Spanielmadlady in reply to Hattifattener

If your gp is supportive than that's fantastic..I'm lucky mine is too. There is most probably something going on but its possible it hasnt manifested itself enough yet and because so many AI illnesses overlap its very difficult to unravel what is going on.do you know what your ANA result was ? X

P.s my diagnosis took 5 years

Hattifattener profile image
Hattifattener in reply to Spanielmadlady

Thank you. So while 4 months of this has felt like forever, I need to calm my jets somewhat! No, don’t know what my ANA was, the GP said it was positive, plus another one came back high, plasma viscosity maybe? Anyway, we will see what the next lot of tests say. I really appreciate your insights.

Ingrid1234 profile image
Ingrid1234

Hi,The scary thing with lupus is that skin manifestations eg red rashes on face, hands and back can come and go very quickly. Even blisters.

With me I get feverish, hot, flushed in the face with red raised rashes on fingers of hands usually in the late evening before my night meds are due:MMF plus paracetamol. Many times joint pain in the knees seem to strike!

So important to take photos noting time and date.

It all calms down when I wake up next am for the next MMF, Prednisolone, HCQ dosage etc and builds up again when eg I’m out in the sun briefly hanging out the washing😫 forgetting to wear a hat.

Yes , keep a detailed photographic diary and note all your symptoms and signs.

Hattifattener profile image
Hattifattener

Great advice, thank you.

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