Lupus diagnosis

[BlackInk]

Hello

I've been suffering with a long and multiplying list of seemingly random symptoms for a good few years now, and I'm desperate to find out what's going on so that I can feel better. GPs have been pretty dismissive although I've had some tests/treatments. GP yesterday mentioned Lupus but then said it couldn't be that as I didn't meet the criteria. I've checked online and have/have had the following symptoms. In your opinions would this be enough to justify a referral for suspected Lupus?

PHOTOSENSITIVITY – I get the typical bumpy fluid filled spots rash after being in the sun, started a few years ago and gradually getting worse.

ORAL ULCERS – I get pretty regular clusters of mouth ulcers and used to get a sore in one nostril that came and went for a few years. I've never mentioned this to a GP and never been asked.

SEROSITIS – I have a lot of trouble with stomach pain and nausea, endoscopy a couple of years ago didn't pick up anything except a hiatus hernia. Not sure whether my symptoms could be serositis?

ARTHRITIS – Confirmed arthritis in little finger, pain, stiffness and swelling in various hand and foot joints, back pain and one-sided jaw pain.

NEUROLOGICAL DISORDERS – I suffer with tingling, twitching, dizziness/spaced out feeling, poor balance, visual disturbance... I don't know whether these would count as neurological disorders?

HAEMOTOLOGICAL DISORDER – I have had low iron/ferritin on and off for years, low B12 (not diet related), on and off low platelets. GP has treated these when below range, but no cause identified.

ANTI-NUCLEAR ANTIBODY (ANA TEST) – Positive ANA result a couple of years ago, but standard follow-up tests came back negative. No further action taken.

I also have several of the other main symptoms of Lupus – exhaustion, miscarriages, weightloss, various rashes...

Thank you for any advice!

BI

[Horsewhisper]

Hello BlackInk, it seems like you have been dealing with a lot of symptoms over a long period of time and it’s not surprising to hear that you want to find a way to feel better. Lupus is a strange beast and how it affects people is different from person to person. You have had a positive ANA test in the past which may suggest autoimmunity and if I were in your position right now I would push my GP for a referral to a Rheumatologist to get to the bottom of your symptoms and suggest a treatment plan. Do express how rubbish you are feeling and how it impacts on your day to day life, such as exhaustion etc. and take a list of your symptoms and photos of rashes, joint swelling, redness etc. Sometimes it’s a case of making yourself heard and kicking up a bit of a fuss. Maybe post on this site asking for recommendations for a Rheumy in your area so that you can ask your GP for a referral to a particular Rheumy. It can often be a long journey to diagnosis and treatment, many people have been through similar, you are not alone. In the meantime, look after yourself through a good diet, exercise, rest, relaxation and sharing nice times with friends and family. Good luck and let us know how you get on xx

[BlackInk in reply to Horsewhisper]

Hello Horsewhisper and thank you for replying. I've spoken to my GPs so many times about my symptoms, shown pics of rashes etc, but they say that a referral to a rheumatologist would be rejected as I don't meet the criteria for any possible autoimmune diseases. I just read the notes he made after talking to him yesterday and he's put - patient is convinced something is wrong and she shouldn't feel like this - in quotes, with strong undertones of - she's a raving hypochondriac...

[Horsewhisper in reply to BlackInk]

Oh BlackInk, that’s not very supportive of your GP and quite disappointing for you as a patient. I can relate to this a little, as after being in the diagnostic wilderness for many years and being told by my GP my symptoms were due to stress, working long hours, family life, peri-menopause, anxiety etc etc, my ANA came back positive and she then said “you don’t look like someone who has Lupus”. She refused to refer me so I went privately and the rest is history as they say. Fortunate she retired soon after and I now have a brilliant GP who works with me on managing my ongoing healthcare and listens to what I have to say. I am in the NHS system now and no longer go private. Maybe see a different GP? Take a look at the criteria listed on Lupus UK website and you could even call and speak to someone at LUK who could make suggestions to help you. GP’s who fob people off are endangering to health. Try a different route, I hope this helps xx

[KayHimm]

You have really been suffering with a lot of symptoms. I like the way you listed your symptoms in the domaines used to diagnose lupus.

Maybe the best approach would be to ask your GP why he/she thinks you do not have lupus. You could go through these domaines and get an understanding of what is relevant and what is not. As an example, your oral ulcers may be consistent with the type of ulcers lupus patients get. I get frequent ulcers but they are canker sores and not relevant.

Your GI issues go be related to autoimmune disease. On the other hand, GI symptoms are not used as diagnostic criteria. The inflammation that is more typical of lupus is of the membrane around the heart and lungs.

Does you doctor say what he thinks is causing your symptoms?

It sounds like you are in need of good explanations on the part of your doctor,

Best of luck.

K

[CHEZZAD68]

Hi,

This sounds very familiar, I think a lot of people with lupus present to their GPs with various symptoms over longer periods of time. I know I did.

I had many of the symptoms but most had just been dismisssd whilst others were investigated through hospital specialists with no conclusions reached. It was only after I came upon a blog for chronic fatigue syndrome (I was diagnosed with that for over two years) that I found out about lupus.

I firmly told my GP that 9 lupus symptoms and he grudgingly said he would still refer me to a rheumatologist after my blood test was negative. My consultant rheumatologist changed my life.

Getting the referral is the key so don't take no for an answer. I understand it is hard and feels like one long fight but you aren't wrong in pushing for it and it sounds like the logical next step in treating you health issues.

Good luck, I hope that you get the treatment you need and deserve. X

[Summerrain14]

So sorry to hear how unsupportive your GP is being. Sadly it seems a really familiar experience as Lupus is so tricky to diagnose. However a referral to a rheumatologist is the least your GP can do as need their specialist input. Keep going back and asking for that much needed referral. Keep a daily diary and photos if you can too. Good luck and really hope you get that much needed referral. x

[BlackInk]

Thank you all for your kind and supportive responses! My GP is meant to be calling me later this week so I will do my best to stand my ground. I have no idea what's going on. I have lots of other symptoms like twitching and fluttering muscles/nerves, pins and needles, digestive issues etc. which don't really match with lupus, but I keep coming back to this (and also to MS, which is even scarier). I will check back and let you know how I get on. Thanks again!

[Pmeh]

Being diagnosed is such a long horrible process I have discoid was never tested for sle which annoyed me but I'm now with rheumatology

I have all of those symptoms plus a few more I really feel for you dont give up hope you get the help you need x