September's Topic of the Month - Getting Diagnosed (We want to hear your tips and experiences)

September's Topic of the Month - Getting Diagnosed (We want to hear your tips and experiences)

Our topic for discussion in September is 'Getting Diagnosed'.

Getting a diagnosis of lupus or one of its associated conditions can potentially be a long and sometimes difficult journey.

We want to hear if you have any tips for making this process smoother. Did you ask your doctor to investigate you for lupus? How did you approach it with your GP? Do you have any advice for someone approaching their first rheumatology consultation?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

34 Replies

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  • I was expecting more replies, considering the how often this comes up on HealthUnlocked. Best wishes Kevin

  • I'm sure we'll see some more responses over time. We have been getting some responses over facebook already too.

  • Hi Paul

    Best advice I can give to get diagnosed is be prepared for a long battle as it isn't always easy.

    Know that your entitled to a second opinion be it with GP or Consultant on the NHS if your not happy with your care anytime!. Trust your instincts that if you feel things aren't right or being looked into properly, they probably aren't and take action, you will get there!.

    Another good tip is if your waiting a long time for your appointment you can ring the clinic and ask to be put on cancellation list. If very poorly, you can ask your GP to contact them to see if you could be seen sooner.

    If you think you may have symptoms of lupus or any other immune illness your GP should run bloods to include inflammatory markers and ANA or anti nuclear antibody. This ANA is important because if positive whilst non specific for lupus , shows there's something wrong with your immune system and referral to a Rheumatologist is needed for further tests!. The pattern it shows is important for what type of immune illness it could be.

    I'm sure others will share some good tips too but hope mine are helpful for the blog. X

  • Great reply Misty. Just wanted to point out that yes in England you have a right to a second opinion from a specialist and sometime from what I have read here, people have had more, where they don't like a consultant etc. But in Wales we don't have that right. NHS Enlgand and NHS Wales are very different. This is leading to more and more unfairness for people living in Wales with Lupus. Sad but true. I read someone here went on line to change their appt from a local Rheumy to a lupus specialist themselves, without going back to the GP. To me that is huge. We have no such system here. I hope you don't mind me commenting. And yes, please, more members reply. x

  • Hi Wendy

    No I don't mind you commenting at all and I hope Paul adds these important differences in healthcare provision in the blog!. It's right that you highlight how different Wales is and maybe someone similarly will add what Scotland and Ireland are like if very different. It makes me grateful for living in Britain. Hope your get together goes well and your MRI results. X

  • Thank you! I will of course post about my meeting (really looking forward to it) and my results when I get them. Xx

  • Hi misty14,

    Thank you so much for sharing your advice. I think there is definitely an emphasis on being actively involved in your own healthcare during the process.

  • Hi Paul

    I expect you've seen the important differences in healthcare rights that Wendy has highlighted in her reply to me re Wales. Would be good to include this and what Scotland and Ireland are like if someone replies and there different in the blog. Hope you agree. X

  • Hello. I spotted your post and have been thinking about it a lot. But I'm not sure I can make my experience fit into just a few lines! It's been a very bumpy ride and I don't think I have totally accepted my diagnosis/new life and the fact that I was wrongly diagnosed in 2013 with SCLE. The way I have been treated locally still makes me angry. I have had a very reluctant Rheumy and as you know ended up involving my MP and the health board in my battle - without success. I had a great Dermatologist last year for 9 months but then he left. So I was on my own again. It wasn't until my private appointment with Dr Kaul at the London Bridge Lupus Centre in April this year and his amending my diagnosis to SLE that I felt I could finally trust someone completely. I totally appreciate that I am very lucky that I do not have kidney, lung, internal organ involvement, my lupus is considered mild and is now largely under control, but I still feel that my local care is lacking. I know the average diagnosis takes around 7.5 years but really in 2017 this is too long! Plus the differences between NHS England and NHS Wales are frightening! We have no Lupus Centres of Excellence and a strong reluctance to refer people for specialist diagnosis and/or care to centres in England. I thank my lucky stars that my husband watched that programme in October 2013 - presented by Prof. Brian Cox featuring GlaxoSmit Kline and their lupus drugs and my husband making that connection with my symptoms. In hindsight I'd had lupus for about 5.5 years by that time. I went to my GP and she agreed that she thought I had lupus - I guess that I am lucky she didn't resent me for going to see her and telling her what I thought I had - I know some doctors don't like you self diagnosing or being Dr Google. One thing I would have done differently if I had this time over again - I would have taken my first set of bloods from October 2013 and gone straight to London Bridge Lupus Clinic. I could have saved myself a whole lot of pain and suffering and speeded things up hugely by getting specialist care from the off. But we can't turn back time and lupus it what it is. Thank goodness I know where to go for help now. I really hope more people reply. Maybe it's because it's hard to sum up such long, difficult, emotional journeys succintly? Wendy

  • Hi Wendy39,

    Thank you so much for sharing here. It is interesting that your diagnosis was preceded by your husband learning about lupus from a mention on TV and then your GP agreeing to do the tests. It really highlights the importance of greater lupus awareness.

    Your input is very much appreciated because you have had such difficulty being in a part of Wales with no lupus specialists (whom we are aware of at least) and having to battle to be seen by someone with enough experience. The devolved NHS makes access to specialist care much more difficult unfortunately.

  • Thanks Paul.

    Yes, I have a lot to thank my husband for! Neither of us had heard of lupus before at all. I hadn't been well for weeks at that point. I was flaring but didn't know it. The sun seemed to have really effected me all that year and the symptoms just got worse, as left untreated. I had been putting the children to bed - then aged 9, 8 and 5 - and then going to sleep myself, sleeping right through from about 8pm to 7am and still feeling wiped out. We had no idea what was wrong with me. The house was a complete tip and I was struggling to cope all round. He actually woke me up that night, as I was alseep in bed and said I know what's wrong with you, you have lupus and he explained. I was so tired and I told him off for waking me up!!!! But the next day I googled and realised he was right, so we had a long chat and I went to the doctors. Bless him.

  • To just add to what the others have already said, I would say it's a good idea to gather as much information and evidence together as you possibly can and then keep copies of everything. If you've got a decent GP on-side then get as many blood tests done as you can through them BEFORE you get to the stage of seeing a rheumatologist (and keep copies of test results - I have found that doctors help themselves to whatever you have and sometimes past results then get lost). If you leave everything until you see the rheumatologist what can happen is that you are then sent away to go and get various tests done and you might not see the consultant again for anything up to another 6 months so having information to hand when you are sitting in front of them can help to push along a diagnosis.

    Sometimes the GP will refuse to refer you (happened to me despite having irrefutable evidence that I had lupus anyway) - this can happen when they are running out of the number of referrals they are allowed to make within their financial year (I have been told this actually happens) and you might need to push them to do this for you or alternatively you could ask for a second opinion from another GP in the practice. In my case, it took another 9 months before a locum referred me. Despite feeling tired and ill, we have to be persistent! Another option for those who can afford it and feel that they are getting nowhere is to ask your GP for a private referral to one of the lupus centres of excellence who can then write back to your GP asking for you to be got into your local system. Some people do find it really useful in any case to see one of the major specialists and it may not be an expensive as you think on a one-off type basis.

    Hope this helps a bit anyway.

  • Hi SjogiBear,

    Thank you so much for sharing your advice and experiences - this is very helpful.

    Just one thing I would like to slightly correct - all of the LUPUS UK Centres of Excellence are NHS rheumatology departments. Some of the consultants working at them do also have private clinics though (such as at the London Lupus Centre) and after a private consultation they may be able to add you to their NHS clinic.

  • Thanks for clarifying that point Paul - that's exactly what I wanted to get across. I'm not sure if some people realise that they can get to see the same NHS consultants privately if they are unable to wait on the NHS to do so and then subsequently get back into the NHS system. It shouldn't have to be this way of course as we all know but when you are feeling desperate to get an answer this can be a way that I know several people have used.

  • I started realising something wasn't quite right when in was becoming more and more fatigued, this greatly affected my job and after a few months of struggling along, the fatigue was then joined by intense joint pain and then pains in my chest and abdomen, this combined saw me off work barely able to walk around the house. After a couple of visits to the Drs seemingly getting me no where, i started researching the symptoms online and lupus came up as a possible which i dismissed until i saw the symptom of the rash, with this I looked in the mirror and looked at the distinctive butterfly rash which I always just assumed was a combination of flushing and dry skin. Armed with a picture of the rash at its worse I went back to the Drs. With this clear indication, the doctor decided further test were needed. In the meantime I had to be signed off. On one occasion I saw a nurse practitioner for this and I told her why I was off and the suspected diagnosis and she literally laughed at me and said there's no way a young man like myself has lupus. I was very angry when I left but luckily I had the satisfaction of seeing her a few months later with the letter of diagnosis in my hand. Needless to say she didnt apologise but atleast admitted she was wrong. I was one of they lucky ones, I was diagnosed in under 6 month and within a couple more of treatment I was back in reasonable health and back to work (if not in the same job). Sometimes you have to help yourself a bit before the doctors can help because you know your body, so you need to go armed with as much information about your symptoms as possible.

    Hope this story can help others. DAN

  • Hi Dan30cr,

    Thank you so much for sharing your experiences.

  • Hi I would advise keep a record of your symptoms (Lupus UK do a good progress diary lupusuk.org.uk/lupus-progre... )

    Don't forget to note things like aches and pains in joints or muscles (and/or how much over the counter pain meds you need to take)

    Check to see if you get worsening symtoms such as fatigue after being in the sun / a "sunny holiday" as not all of us get a typical lupus facial rash but we are sun sensitive in that UV light/ sun can give us flare ups.

    It's also worth keeping a record of just how well you sleep (or not) and just how fatigued you feel (eg does it impact upon other activities, do you only work and sleep and can't manage anything else)

    From personal experience I also wish GP's would be more likely to run Immunology blood tests (especially the ANA) for anyone who has persistent fatigue that lasts months) ... I had countless blood tests including more than 5 for thyroid but no one thought to do an ANA ... I'm not sure why as I don't think they cost more than doing a thyroid test.

    I also know of people diagnosed with chronic fatigue syndrome (CFS)/ ME or those with diagnosis of fibromyalgia who have not had ANA tests ... I think the ANA should be done before giving these kind of diagnosis just in case ( again from personal experience as I almost got missed having Lupus diagnosis and almost got a CFS/ME diagnosis)

    Finally accept that it is very stressful when you feel ill, tired all the time, and are awaiting diagnosis / just get a diagnosis and this can impact upon your mental as well as physical health so make sure you discuss it ALL with your doctors

  • Thank you so much for sharing your tips and personal experiences fabwheelie. There are almost certainly many people without a diagnosis of lupus or who have been misdiagnosed with fibromyalgia or ME/CFS due to the correct tests/referrals not being made.

  • There are a couple of problems with getting a diagnosis as far as I can see.

    One, that with autoimmune conditions the decline can be slow, so it just feels normal. I had problems with my immune system for a number of years - thyroid issues that seemed to come and go, frequent illnesses, fatigue, aches and pains, raised lymph nodes, pink mottling either side of my nose though no-where near a rash - but never suspected Lupus or indeed any AI condition. I might have suspected some kind of autoimmunity problem had I known more, but I didn't. That's partly because, although AI issues run in my family, it was a big secret. And partly because online searches don't convey the real nature of Lupus.

    Two, unless you have some obvious markers for Lupus, you are unlikely to be tested for it. Doctors are human and don't have much time to assess you. I was only tested when my joints went, and he initially though RA. I wish I'd been tested before it really kicked off, but I'm counting my blessings I had a comprehensive set of tests.

    I was 'lucky' in that my bloods were fairly clear cut. If they aren't, it must be very, very difficult.

  • Thanks for sharing Treetop33, there certainly are some big obstacles for getting a prompt diagnosis of lupus in many cases. Sharing personal experiences like yours can help though because it may encourage others with similar experiences to push for the right tests.

  • Hi

    I had my bloods come back and they said

    ANA slightly positive but ENA Or something like that came back negative

    Have been really poorly lately

    Hands itching lower leg feet swollen tired and boils under my arms and groin and pain in soles of my feet

    What is all your views?

    Do I have lupus? Have got an appointment in oct 13 to get the results and I'm beginning to think I can't cope or wait till then

    I'm going down fast

    Help please x

  • Hi NannyAlli,

    Was it your GP who did these tests or was it a rheumatologist?

    ENA stands for 'extractable nuclear antigens'. The test looks for a panel of other antibodies which are found in lupus variants such as Sjogren's syndrome and mixed connective tissue disease.

    Do you know if you had a test for anti-dsDNA antibodies which are highly specific to lupus?

    I'm afraid we couldn't say whether you have lupus or not. If you are struggling with your symptoms and cannot wait until October 13th, you can try calling your consultant's secretary regularly to see if there have been any cancellations and whether they can fit you in sooner.

  • Hi

    Thk you for your reply

    It was a rheumatologist that done my tests x

  • I haven't had a chance to read the other replies so sorry if I'm repeating anything but the biggest help I had to finally getting formally diagnosed was to take an A4 sheet with me with a bucket list of all my symptoms - some that fitted the lupus picture and some that didn't. I just noted everything that seemed a bit odd to me and handed it to the consultant and it was the first time anyone had looked at the entire picture - when I started going through symptoms verbally I could see doctors turning off very quickly and moving on as they seem to want everything covered in about 2 sentences sometimes but doing it this way they could scan it very quickly and get a better view and it worked better. Plus having it writing means it goes on your medical file so doctors sit up and take more notice.

    Because I kept my list on my computer I could then update it to show which symptoms were better, which were worse and any new problems as I went along. I stopped doing it after a while but I wish I'd kept it going as sometimes you don't notice little improvements and it helped me see them too.

    My other advice is don't be intimidated and have the confidence to ask questions and disagree with the doctor if you think they are wrong. I had one consultant tell me he was putting me on steroids when I didn't think it was justified and it felt like he was taking an easy route - I told him this and pointed out that he needed to discuss that decision WITH me not AT me as I was the one having to take them. It may be that some doctors don't take well to it but he actually did take it well and it pulled him up from fobbing me off and made him talk to me more and included me on decisions on my treatment which for me is very important. I now have a fantastic consultant who very much works as a team with me and I love her.

    And get copies of blood tests - you wouldn't believe how many times I've spotted things on my results that the docs have overlooked. It's usually something small but it's enough to back up that something is going on. Nobody cares about your health as much as you do so don't leave it in someone else's hands basically - be your own advocate because nobody will have such a vested interest as you do.

  • That'll be BULLET list of symptoms ... lupus was never on my bucket list lolololol

  • Thank you so much for sharing your tips and experiences Mifford. Did you order the symptoms in any way (such as in order of most difficult to live with or most recent etc.)

  • I didn't as I was still quite naive to it at that point but that would have been an excellent idea. When I updated it later I did colour code it to severe, moderate, worse, mildly improved, significant improvement and so on

  • In hindsight I can see my issues of auto immune issues started in my twenties with thyroid issues. Started on thyroxine but GP refused to do antibody testing or refer me to Endocrinologist for management. My mother had thyroid storm in her teens. First clue. In my twenties - unable to maintain pregnancy. Severe endometriosis. Migraines. In my thirties - disc prolapse in spine. In my forties - frozen shoulder. In my fifties - major scalp rash. Dermatologist just said auto immune issue and did not ask for any other history. I didn't know enough to tell him. Swelling hands and feet. Hypertension. Presumed 'allergy' to sunburn cream. DVT in jugular vein. Facial rash after sun. Major Vit D deficiency. Get more sun I was told! Raynauds in hands. Chillblains on toes. Always exhausted and unable to cope. Every Doctor treated each issue in isolation. That was the issue. My sister in law connected all the dots. Thirty years since first presentation of auto immune illness a Doctor is looking at EVERYTHING. Bingo. Diagnosis. Well, almost. APS yes. Probably Lupus. Possible advancing Scleroderma. Always a work in progress it seems.

  • Thank you for sharing your experiences Puska. I'm sorry to hear that it has taken so long for someone to connect the dots but glad to hear that you are finally making some progress on getting a confirmed diagnosis.

  • My experience, lupus isn't a common disease here in Nigeria. Before the diagnosis, I had terrible headache, and then fever, I would get really cold at night even when others are sweaty, was treated of malaria and typhoid, didn't get any better, then I started having difficulty swallowing, followed by a swollen neck,did a neck scan which said my left thyroid was inflamed, T3, T4 test came back okay, then my knee and ankle started to hurt, followed by edema, saw a rheumatologist who recommended ANA and anti CCp test, ANA came back botherline positive fine speckled 1:80, been on prednisone and hydroxylcholoroquine since then.

  • Hi Adah, thank you for sharing your experiences.

  • It took the death of my baby aged 10 days to be diagnosed with lupus in 1994, actually I diagnosed myself and doctors confirmed it.

    In 1981 aged 21 I was having odd symptoms, I was very tired and achey. I went to the doctor numerous times. Once I couldn't move because of an excruciating headache, my boyfriend called the doctor out , he said that I was an anxious patient.

    In the late eighties and early nineties I developed rashes, fevers and some days could only shuffle as my joints were so stiff.

    I had seizures and depression . Through all this time I did not have a single blood test, I was not taken seriously, just another hysterical woman, just chuck some diazepam at her.

    I got pregnant in 1993, at 19 weeks the scan showed that her heartbeat was slow but strong, I was referred to Guys pediatric cardiology department. I was told that although her heartbeat was slow she would be alright, bloods were taken for lupus but I didn't know what it was and because I thought all was well I didn't think about it, I certainly wasn't told what lupus was. I was told to come back in a month. A month later I was told she was going into heart failure. I asked about the blood test, they had lost it.

    Anna was born by c section at 30 weeks, after doing very well for the first few days she died at 10 days.

    I read a couple of lines about lupus and straight away knew I had it.

    I went back to see the consultant six weeks later, I asked the results of the second lupus test, he said it was negative, I asked him to check again he came back and said he was sorry and that it was positive for lupus. It took 13 years and a dead daughter.

    I suspect that being from a working class background and being a woman made it harder to be heard. The anger hasn't diminished at all, I believe that if I had been diagnosed earlier my baby would be alive. A short walk from Guys was Professor Graham Hughes lupus pregnancy unit, if only I had known.

  • Hi kt11,

    Thank you for sharing your experiences. I am so sorry to hear about your loss which may have been preventable with earlier diagnosis.

  • Thank you, I'm sorry it is so negative

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