Advice needed with Diagnosis: Hello everyone, I... - LUPUS UK

LUPUS UK

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Advice needed with Diagnosis

SadGirlRaceClub profile image

Hello everyone,

I would like to start with a little bit of background with myself. I have been experiencing joint aches since I was around 18/19 that have gotten progressively worse as Ive gotten older (now 26).

After our most recent heatwave in the UK I have felt incredibly unwell - my joints are inflamed and I have chronic fatigue. I also get what I now understand is the malar rash across my face and almost blister looking rashes on any exposed skin.

I booked an appointment with my GP and demanded that he investigate me for Lupus, as I have all of the textbook symptoms. My GP wasn’t very enthusiastic about this but he pushed me through for some blood work.

After a few days I rang the GP surgery and asked what my blood results were and the receptionist told me “everything is normal - no action needed” so I requested to speak to the GP about this as I was still in pain and had no answers.

When I eventually spoke to the GP about my blood results she informed me that my blood test was not normal (not sure why i was told it was) and that I had tested positive on my ANA count.

At this point I asked to be referred to a specialist that could investigate this issue properly because it was apparent my GP had no interest in my issues as she had batted off all of my symptoms and told me that it could just be “all in my head”.

I am very frustrated that it has taken them so long to even investigate this issue i’ve been having for so many years, and for them to lie to me about my blood tests is just appalling. Has anyone else experienced something similar?

How long will i have to wait to see a consultant? I have read it can be anywhere up to 18 weeks - which would be just before christmas 😞

Thanks for reading

13 Replies

ir took over a year before i was referred to rheumatology and then diagnosed only because i told them my mum died from a connective disease and cousin from lupus. i had no idea what either meant but thats when it was full speed ahead with consultants

I am hoping to finally get someone to listen to me once I see the consultant. It is a difficult time to get any kind of appointment during the current pandemic

tell your gp to refer you to guys hospital.. demand they do it

I have requested my GP refer me to City Hospital in Birmingham as it is my understanding they have a Lupus unit there. I’m not sure my GP would agree to sending me over to London 😞

Hi there. I am so very sorry that you have suffered for so long with debilitating pain at such a young age. I believe that it is Prof Caroline Gordon at the hospital. She is very well respected so you will be in good hands. Are you able to pay for an initial private consultation? I was told it would be 18 months until I saw a Rheumatologist ( 12 years ago) so I had the first appointment as a private patient. Gather your evidence now. Take photos of rashes, swellings, make a bullet point list of all your symptoms. Good luck xx

The average time for a diagnosis of Lupus is 6 years. As an established patient I have been told there are no appointments for 6 months so it's possible the wait could be long then the usual 18 weeks. some Rheumatologists won't see you with just a positive ANA so be prepared for that.we are too complicated for gps .there is an 11 point criteria for lupus you may find useful .Good luck

Hi,

Thank you for your reply, that’s disappointing to hear that there are no appointments for 6 months.

I have seen the 11 point criteria in the past and I have 7, possibly 8 out of 11. I think the minimum is four I believe?

I only gave a brief description of my ailments but this is something that has been ongoing now for 7 years and it would be nice to finally have an answer 😞

Yes it is 4.it took 5 years for me to get a diagnosis after been told there was nothing wrong.i later found out when I was diagnosed with lupus nephritis in 2019 that my ANA and DsDNA were positive in 2016 but it was either missed or ignored .I should of had a rheumatology check in June but got a letter saying nothing for 6 months .I am still being monitored for my immunosuppressants which I guess is the main thing.keep a symptoms diary and pics of rashes, ulcers etc. Main AI illnesses overlap so getting answers is difficult and if you have 1 there is a good chance you will have others .we are here for support ...weve all been where you are now x

Paul_Howard profile image
Paul_HowardPartner in reply to SadGirlRaceClub

Hi SadGirlRaceClub,

What Spanielmadlady has said could be misconstrued. A study we conducted found that the average time to diagnosis was 6.4 years, but this is from the onset of first symptoms. There can be many reasons why this is so long and often when lupus is actually being considered and tested for, the path to diagnosis will not be so long.

I hope that your wait to see a rheumatologist wont be too long. Unfortunately, in some areas, the waiting lists are quite long at the moment because of the backlog caused by the pandemic. This isn't the case everywhere though.

Give it a couple of weeks to see if you get a referral letter and then you could chase it with the hospital. When you have an appointment, you could ask to be put on a cancellation list to try and be seen earlier.

If you need any tips or guidance for getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...

Like it or not the stark reality is far too many of us wait many years for a diagnosis .when i think back over the years ive had many symptoms including polyarthritis in 1996 which link to lupus but were ignored.even when I became seriously ill in 2013 it still took 5 years .if you include first symptoms it actually took over 20 years .there is a huge difference between the onset of first symptoms and the point at which you actually do something about it by seeing a gp.gp ignorance and consultant apathy play a huge part in it all too

Even for established patients on strong meds like myself there are no appointments for 6 months and there is no guarantee we will get any then as we will be into winter and what ever that may hold.its not just rheumatology it's also respiratory so I remain stuck on steroids as there are no appointments to manage withdrawal.

I was the same as you. I uploaded photos to my dr of rash etc. Was referred to rheumatology. Diagnosed UCTD and given hydroxychloquine medication which has improved many of my symptoms. I should have gone back to hospital within 6 months( there today 4 months late) but I'm not complaining as I am stable at the moment and know others need the appointment more than i have. Consultant told me lupus is something she is concerned with but too early to diagnose and again I'm ok wih that as I understand hydroxychloquine would be the first course t of reatment anyway. I hope you get your first appointment soon lovely x

Hi with hindsight it took me over 15 years to get a diagnosis from the first symptoms (blood in urine), my GP was great but until March no one had put together the mouth ulcers, migraines, inflammatory arthritus etc and come up with Lupus. It was only when I got the malar rash that the penny finally dropped. What advice I would give you is to take photos of everything eg swollen joints, rash etc as unless they are present when you see the doctor it is difficult for them to make a diagnosis. My consultant even wanted to see the photos on my phone rather than the print outs I had prepared, I presume to make sure they were authentic. It is a shame that doctors can't just believe the patients, but having been the other side of the fence (worked in NHS) I am afraid some patients do lie.

Yes definitely agree Cowsaresweet! My rheum isn’t bothered about seeing photos at all, in fact I’ve had to push for him to acknowledge them and been told “well, seeing as you’ve gone to that much trouble then 🙄”Makes me so mad. Nobody wants to be this poorly so I took photos to try and be taken seriously. Anyway, I digress. The truth is I am now way beyond the 6 year mark from first symptoms to diagnosis (persistent mouth ulcers started between 15-20 years ago) and yet here I am being told it’s all in my head still, with a strong family hx of autoimmune and the like.

As a message to the OP, I think In my area patients are waiting about 6 months for initial rheum consult on the NHS so if you can afford private it may be the way to go as GP has already done bloods. I am in Kent and doctors prices are approx £260 for initial consult.

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