We want to hear your stories about your first rhe... - LUPUS UK


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We want to hear your stories about your first rheumatology appointment

Paul_Howard profile image
14 Replies

For May and June we would like to invite you to share your story of the first rheumatology appointment you had.

Receiving an initial referral from your GP to see a rheumatologist can be rather unnerving, especially during such an uncertain time when various possible diagnoses are being considered and you are trying to learn as much as possible about conditions you may never have heard of before.

For this reason, we'd like to share some first time experiences of seeing a rheumatologist to give a better idea to those that have yet to be referred of what they are likely to face. If you are able, please take the time to share your feelings prior to and after the consultation, any tests that were done and the next steps that were discussed with you. Please also send us a photo of yourself along with your story. Please send your story and photo to paul@lupusuk.org.uk

We'll aim to post one or two stories a month (depending on how many we receive).

14 Replies
suzannah16 profile image

My first appointment was a waste of time. The rheumatologist said " I can't see anything wrong" and that was it. No tests, nothing.

MargaretGail profile image

My first appointment with a rheumy was rather traumatic. She was very rude throughout the appointment and concluded that I only had chronic fatigue. I've forgotten many things since then but never her name!

lexi19 profile image
lexi19 in reply to MargaretGail

Hello. Sorry to trouble you. How long did you wait for appointment? I to have been referred. After reading your review do hope they listen.

MargaretGail profile image
MargaretGail in reply to lexi19

Hi Lexi 19, I went private initially so waited a matter of weeks for my first appointment. My 26 year old son was referred last year and had a waiting time of 3 months to see the Rheumy but he was so poorly he went private too. I must say that after my initial bad experience my next Rheumy was great and the one I have now is too. :)

Queencara78 profile image

Hi all, I had my first rheumatology appointment yesterday and left feeling very deflated and questioning the reality of my symptoms. He made me feel like a fraud that was wasting his precious time, all because my bloods were not positive (even though my c3 was slightly lower than it should be).

I questioned whether these results only show as positive in the early days with an active flare, but was just brushed off with negative is negative. I had a double skin biopsy almost two weeks ago now, taken from normal skin as well as from a lesion which has been present since February (my dermatologist, basically said he had seen this type of lesion on people with mixed connective tissue disease).

But the rheumatologist wasn't interested in seeing any of the pictures I'd taken over the last six weeks of facial rashes and swelling of my nose and cheeks, neck and fingers, or even the picture I had taken of the lesion before the biopsy.

I was diagnosed with Raynaud's last December, with other symptoms occurring since such as increased episodes of trigeminal neuralgia, severe headaches, extreme fatigue, muscle weakness (especially of my upper right arm and shoulder, which is so stiff sometimes that I cannot raise my arm at all) and livedo reticularis, butterfly rash etc....

But no follow up appointments or bloods because he was only interested in the negative results from previous test. I will not be going back to him when the results of my biopsy confirm the dermatologist's differential diagnosis as subcutaneous lupus, mixed connective tissue disease, angioedema.

Would be helpful if anyone can recommend a rheumatologist (that can think outside the box) in the Milton Keynes area please.

Sorry for the long winded rant.

Paul_Howard profile image
Paul_HowardPartner in reply to Queencara78

I think that the nearest lupus specialist to that area would be Dr Frances Hall at Addenbrookes in Cambridge.

Stripes1967 profile image

My daughters first Rheumatologist was kinda like being questioned for a crime you did not committ and them not believing anything you say. My daughter has been pumped up on so many pain meds that she was addicted. I told the rhummy and she went on that she didn't want to treat her. I was like ok, guess that is how you get out of that. All are not bad and can not blame them for this, it is hard for everyone to fight this disease.

tsizzle profile image

Rheumy took blood test. First was high and positive, second was negative. She accepted the negative test but not my symptoms and positive test. She gave me a weeks worth of steroids and said see you in 2 months!! What?!? Why would she give me a weeks worth of meds and not see me back for 2 months to see results?!? They have tried to give me anti-depressants...the only thing depressing is not being believed...

Fennella02 profile image

My first appointment was back in 2001 after many years of me believing I had RA but wishing to avoid going near a hospital. The Consultant pretty much diagnosed me on the spot - swollen, red finger joints, malar rash, Vasculitic lesions, Raynauds plus my history. 'Textbook presentation', she said. She treated me with steroids then and there and stuck to her diagnosis even though the blood tests came back inconclusive. I was less convinced than she was but I realise now how lucky I was to have that instant recognition and subsequent treatment.

1963 profile image

My experience was started at GPS, had swelling in all my joints at the age 14-15, everyone (family) said growing pains, so tried to ignore it, went to GPS because of a rash on hands,he saw fingers were bent and deformed,got me seen by a rheumatologist,(1979) treated for RA for a year, discovered I had SLE @ APS. Raynauds . I didn't realize at that time,how serious it all was, to young. over last 35 years got a few more add ons, also have damaged from the treatment for this. Sad to say steroids was only treatment available to us then. I have been under the same consultant,since 1979,. Had some very scary times, and very long hospital stays, many a time I didn't think I'd make it, but I'm still here writing about this.

Cindylynn profile image

Seven years ago my gp referred me to a rheumatologist... It took 18 months to get in, then the they my had a young doctor on a rotational internship do my case history before reviewing her notes and telling me 'you have sle and I'll treat you when you're worse off'. i continue seeing the gp, who has an interest in rheumatology and listens to me about what's going on.

In Canada we've got a shortage of family doctors and specialists so I've been glad to have a doctor who isn't part of a walkin clinic! He's just decided to make another referral back to the rheumatologist so we'll see if my second appointment is any better, the wait list is down to only 14 months now... I'm greatest fear is that this one will say the same as the last guy - while I've learned to manage my day to day pretty well (mostly accepting there'll be good days and bad days, getting used to the symptoms and knowing my triggers, and the strength and courage I find to remind me I'm not alone from the kind folks on this site), it'd be really great to have someone putting all the pieces together so I don't have to do it all by myself... The gp tries but still only allows me one issue per visit and I'm just too tired to go traipsing over every other day😕

Silvergilt profile image

Getting referred to a rheumy took years; once you get 'fibromyalgia' as a diagnosis, everyone stops listening. Everything becomes fibro; blurred vision? Just fibro. Heart palpitations? Fibro. I could probably lose a limb and I'm sure someone would say the pain I'm feeling was just 'mystery pain, it wasn't REAL pain.'

When I finally got a rheumy appointment I wasn't sure what would happen. I came armed with a bunch of printouts from Google (top tip: don't ever do this. Nothing cheeses a medico off more than a patient with a fistful of papers, especially if the papers are right. Feign ignorance, it's better). My first appointment to a rheumatologist, I was extremely lucky; my rheumy works with bodybuilders in the US 'as a hobby' he says. Therefore, he is familiar with seeing people with American builds (and due to mixed backgrounds, our skeletal structure is very different, I tower over most people in the UK). And when I said I had a athlete background, he didn't give the smirk I'd received so often from other medicos; he could see it in my bone mass and build, even if all the muscle had gone to flab. So he didn't tell me I just needed to lose weight for all my symptoms to be cured. After looking through my notes, he decided I needed a bone scan - although he at first said "I doubt anything will show up, but who knows, you may be riddled with arthritis'. He wasn't buying the 'just lose weight' line - 'I work with some of the strongest people in the world, and here in the UK they'd be called fat. They're not fat, they're HUGE.'

So into the bone-scan...where I promptly lit up like a Xmas tree. The radiotherapists actually crowded around to have a look. Does anyone else find it a bit creepy how excited medical professionals are to find how screwed up your body is? "Oh, wow, check out the damage in the feet, that's really incredible!" ....um. Well, maybe I was just miffed the radioactive fluid didn't glow a really superpower-inducing green, but I wasn't too impressed.

So, back to the rheumy who had originally said 'You probably won't hear from us' (again, is it just me, or is the 'cheer up, it's probably nothing' thing a bit irritating?"). I got a call four days later, went in, diagnosed with sero-negative arthritis and fibro, with lupus as a 'maybe'.

This rheumy is the most scatterbrained person I've ever met in my life - loses me notes, crosses them over to other files, forgets to set appointments...but he is the only, literally the ONLY medical pro I've seen in 10+ years who doesn't think I will be miraculously cured by losing a few pounds. So even though he clearly needs to stop taking Charley, I stick with him.

knitsandie profile image

I already had a diagnosis of photosensitive lupus due to hair loss and skin rashes.

When I started to have joint swelling and pain in my hands and wrists, I was referred to hospital rheumatology dept. My first rheumatology appointment was very thorough - weight, height, urine checks, physical examination, extensive list of questions, wrists splints fitted, xrays and blood tests. An appointment was booked for a bone scan shortly after. I felt that he cared! I left with a smile on my face!

My bones are fine but my Vit D level was very low but this was put right.

7 months on, I've mostly had monthly appts mainly due to ulcers on my fingertips which have taken 5 months to heal over, I take 7 different types of meds and I am feeling 'almost' like the real me again!

There are good rheumatologists out there!

My first appointment was just a couple of days ago....after being messed around for six months....but the rheumatologist I saw was brilliant, she did put me at ease straight away and I was grateful for this, she did full history on myself and family, checked everything height weight sats bp, then I got a top to toe examination she asked me several questions about things she had noticed during this examination, she checked previous bloods but decided that she wanted to run some more, although she said I have raynauds she diagnosed fibro and said she thought I had other stuff going on too, she then gave me xrays and another test where I had to walk for 6 minutes to check my sats, she prescribed medication and told me they may take a few weeks to start making any difference, I have to go back in 4 weeks to see her for results and also referal to another hosputal for another test.....for once in the last few years I felt like someone was actually listening to me and that I am not a hypochondriac, she was looking at the big picture of my overall symptoms not just how I was that day...although I did write stuff down and had pictures with me I forgot to mention a few things because we were talking so much.....just wish everyone was treated in the same way no matter where we live, empathy and understanding go a very long way in this world

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