What was your first rheumy consultation like? - LUPUS UK


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What was your first rheumy consultation like?

LottieD profile image

Went to first rheumy visit 2 days ago. Salford. Got up at 5.30am to get there for 9.30 appointment. Felt hopeful. Hubby came with me. Decided because neuro spoke to him instead of me I would go in alone. Wrong move! Prof C decided that from me walking into office he wouldn't look at me or interact in any way. Said hello no response. Woah really rude! Said I'd brought list because I wanted to make sure I didn't leave things out. Here I go again. Tell me the main things. When you have so many debilitating symptoms what do you start with ? No nurse present, separate room. Get undressed to underwear use gown as blanket, don't get into it as that will be harder for me! I'm stupid and of the era you don't doubt doctors. Didn't look in mouth , blisters etc. Swollen glands etc. Maybe he's so clever he doesn't have to exam me properly. Closing sentence don't give up, If you don't use them you'll lose them. That's what I say every day!! See you in 8 weeks, have neuropathy small nerve test on 26 Sept. Getting no where fast. As this all goes on my, life is going down hill fast. Keep going,don't give up is probably the only advice he gave me. We may have a couple of other avenues to go down. So let down. Talking through list of symptoms. Said I was l reading through symptoms to make sure I hadn't missed anything. I asked was he listening, he said NO Then said I'm doing both. So glad he bumped his head on a lamp when going into examining room. I swear I didn't laugh! All this and won't be seen for 8 weeks. At the moment my life is horrendous, as he said don't give up! I would like to hear if anyone has had the same experience So tired of it all.

14 Replies

omg... rude for sure... at least you have neuropathy test coming up. Maybe he wants to wait for that? Did he give you any meds? Maybe the GP sent him all of your symptoms? ((hugs))

I know 8 weeks seems a very long time and I can tell he had few people skills but.... Here's the thing ... Eight weeks isn't actually very long at all in rheumatology world where life moves at a different pace to the real world we inhabit. He would be wanting to see you again soon in his world, but needs to have letters from neurology assessing your small fibre neuropathy (by the way this is far more associated with Sjogrens than any other connective tissue diseases and rarely shows up in nerve conduction tests).

So hang in there all is not lost yet at all. But push for other tests such as repeat antibodies for rare diseases such as Behcets (associated with mouth and genital ulcers) and even consider having a lip biopsy as this sealed the deal for me, if he's equally dismissive next time. He probably would have been exactly the same if your hubby had come with you. Rude is rude in my experience!

LottieD profile image
LottieD in reply to

Thanks for your support.I know its not long.Its just when you are feeling down it always seems like a lifetime.I should think my self lucky that I'm getting some help. This site is great for getting your feelings out.💁😒👍

in reply to LottieD

8 weeks feels like an eternity when you're suffering of course. Wasn't trying to diminish what you're going through or how rude the consultant was.🙄😟😭

I was told I had to wait 2 months last time. But because I've been under rheumatology, neurology in various hospitals and now endocrinology - I knew this was actually a very quick turn around.

Now it's a three month wait while they test me for lymphoma cancer and central nervous system problems - and this is after years of uncertainty, being almost dismissed and four week-long hospital stays last year.

Only in January I was told by the previous rheumy that I didn't have a connective tissue disease at all and advised to search elsewhere. Then my ANA turned positive once I'd come off steroids and was under a new hospital and bingo - I've got my primary Sjogrens diagnosis at last - many years later! But will it lead to further treatment? Who knows! X

So sorry to hear about your experience. No consolation to hear that so many others have had the same. My last Dermo appt was unbelievable - so rude and dismissive. I filled out a form rating the visit - vented my spleen. You are not alone although you will feel it - just read thru some of the posts on here. cant believe you had to travel so far. I don't know how far into your search for a diagnosis you are - after a year I was put on Hydroxychloroquine and the ulcers etc and lots of other symptoms either went completely or were made bearable. Keep in touch and keep going - you will get there. It is a long lonely road to diagnosis with immune system problems.

LottieD profile image
LottieD in reply to Cas70

I feel deeply sorry for all the things that people have to go through. I think you are all amazing setting a presidant for the future . Wouldn't it be great if people only listened to us. All keep well and thanks for your support xx

Cas70 profile image
Cas70 in reply to LottieD

My first Rheumy consult was similar to you only he was charming and patronising rather than rude. So many male egos I have seen this last year ! Keep chin up - how do we get a higher profile for immune disorders (90% female sufferers) ? .!

My first Rheumy was great first visit I took my other half and it was a relief to think that someone did believe me after 7 years plus of being fobbed off by my old doctors. Second visit I was actually diagnosed, third visit he was no help and told me their was nothing wrong with me as the Lupus wasn't active. What I found the worst was that each time I had to ring up and beg for an appointment that I was told would be sent through the post. They told me to ring up a few days before I ran out of Hydroxycholoquine, so I did and they said they would ring me when it was ready, they didn't ring. So I rang them up they hadn't done it. Next time I was meant to get it from dr but Rheumy hadn't written to dr's, so another 30 mile round trip to pick them up. I began to feel like he thought I was making things up.

In the end I managed to get referred to Guy's hospital, much nicer even though it's an hour by car to my mum's then another hour by train to London. Had so much more help.

Get a referal to another one if you are being treated well. There is no need for rudeness, after all you are the client and if it was any other job they were in, they wouldn't get away with it.

I think that I was so looking for help I expected at least to actually be examined properly. Had swollen glands and sore face that day. He was very dismissive. Hubby said if he finds out what is wrong who cares what he's like. I know he's right but consultant could make it a little more pleasant it's bad enough dealing with everything else. Good luck with your treatment and hope all goes well xx

I go to Salford Royal for lupus always been ok , there is a new one now who specialises in lupus dr k , he was very good

Hi Lottie,

Had much the same experience as you did. I was treated almost robotic. The doctor in my opinion was robotic just wanted me answering his questions and nothing out with that. It's very upsetting when you get treated like this and needles to say there was no empathy. I do understand that the doctor is busy especially in rheumatology but they have more insight into how you are and can feel and how debilitating the illness can be. I'm sure they have a time limit with each patient you wait so long for your appt to have a 5 min slot nand if your lucky a new medication! I always feel deflated following my appt. Hope things improve for you. Try writing him a letter detailing your struggles from day to day. Physically, emotionally and physically. He should have read the letter prior to your next appt!

Hope you keep well n good luck xx

I didn't think he could get any worse but on the second appointment he insulted both my husband and myself. I complained to pals. I have now received an apology (sort of). I am now waiting to see another doctor in May. If more people complained it may stop some of this terrible treatment. These consultants are being paid huge amounts of money and I think some, I'm sure not all, forget what they went into medicine for all those years ago. Hope everyone out there gets treated well and with respect ✊ xx

I had the same response when I read my list of symptoms. I just slowed up as it was obvious he only cared about his diagnostic criteria being there on the day, and all blood tests being positive for any diagnosis.My GP had advised me to do the list, so I 'did not forget any symptom' (at the time GPs at surgery were saying it is with Rheumatology now - you are referred, we can't help you anymore)

Wow, LottieD—fire him! I have taken it upon myself to fire really bad doctors. Even told one of them off then and there (possibly pain-induced assertiveness). I have had some terrible, condescending, uninterested specialists, and after seeing some of them I seriously considered giving up on life—‘If they can’t help me, no one can’. It’s not worth it. This crap is difficult enough without having toxic people on your support team. Get a second opinion, more if necessary. Get a really good support team around you, doctors who take your concerns seriously.

My first rheumy appt was totally different to yours. The rheumy asked me to tell him the long story, so I did (I also brought a shopping list of symptoms). He listened carefully, addresses all my concerns, took the most blood out of me ever, checked every part of my body that had problems, and reassured me at every turn. I only fired him in the end because I went and got a second opinion and got an even better experience the second time!

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