Hi All, I'm new to this, hoping someone can just advise and reassure me more than anything.
I'm really not into self-diagnosing, but I'm pretty sure I have Lupus, lots of evidence and supporting pictures which I've documented over the last few months. I also have 7 symptoms of the 11 criteria.
1) What appears to be a mild malar rash
2) Photosensitivity
3) Oral ulcers
4) Arthritis
5) Neurological symptoms
6) Haematological symptoms
7) ANA results (although only mildly elevated)
Trouble is I am literally being dismissed by medical professionals and have recently had a diagnosis of FND, (Functional Neurological Disorder) by a neurologist and FS, (Fibromyalgia syndrome) from a rheumatologist.
Just as a bit of background during a routine dental appointment my Dentist queried mouth ulcers on my palette and I said I was prone to this and they were painless. He said maybe mention to GP as could be Lupus. During my regular Optician appointment, I failed the Field test 3x and my opthalmagist asked if I had a systemic disease.
As a young child and young adult I was under a rheumatologist for Rheumatoid Arthritis then just dropped without explanation.
Over the last few months I have felt so poorly, widespread joint pain and inflammation, sensitivity to sun and breakout in a rash or become tireder and achier if out in in, I have an obvious , although mild malar rash across my cheeks and nose, I have eye swelling and gunky red eyes daily, my blood work had mildly elevated ANA, normal range CRP but I am severely anaemic.
I havent been able to raise my iron and vitamin D levels all year despite taking the required vitamins.
The appointments feel so frustrating as I'm constantly being dismissed.
I have been unable to return to work and feel so guilty.
Ive attached a photo grid showing the rash, sensitivity to the sun, some joint swelling, raynauds and what happens with my eyes.
Just appreciate any suggestions please!
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Loopy71
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I don't know but you remind me of me - I've had malar rash on and off, arthritis, mouth ulcers (didn't realise they weren't normal to have them all the time until the dentist told me to go to the doctors), sun sensitivity, abnormal ANA, vitamin D and folate deficiencies, dry eyes etc etc - I flared badly just after having my daughter over 22 years ago and thought I had some kind of cancer (apologies to anyone who has this), got better, then flared again a few years later, got better but this time I've kind of plateaued and the last rheumy I saw said fibromyalgia. However, I've had ANA testing since then and been alerted to the fact that mouth ulcers aren't normal (I know this seems crazy but after 3 out of 4 weeks of ulcers for the last 6 years or so I thought it was) so I went back to the docs and they're re-referring me.
You kind of feel a bit daft don't you? I doubt myself a lot but the last doc I saw - a Locum told me straight away 'oh sounds like lupus' and to be honest, so do I.
I feel I've been fighting for years for a proper diagnosis - many years ago when the butterfly rash first appeared (I don't get it now) a dermatologist took one look and said 'lupus' but I have no record of it!
It's so frustrating.
Sorry for the long post but your post really resonated with me. Take care and I hope you get answers. x
Your pics look very like mine. I don’t have Lupus but I do have Sjögren’s and Hashimoto’s and suffer most of the symptoms you describe. I had butterfly rashes as a child and was misdiagnosed with RA 8 years ago.
I was told last year that I have secondary FND (functional overlay). Just between us (😏) I apply other words to the acronym - middle one being nonsense! Anyway I gave it back to the kind neurologist and said “no thanks I’m not interested you can keep it” and she has 🤨😉
I can’t advise on how to get through to your doctors that you think something autoimmune is occurring. There are so many posts here with people feeling misdiagnosed or just undiagnosed. Getting past GPs without compelling bloods to back up symptoms is becoming increasingly impossible for many. My ANA has fluctuated from equivocal to high to weak positive over the past few years but the first weakly positive ENA antibody I’ve had last year was then dismissed as a false positive🤷🏼♀️🙄. In the end I was diagnosed by an extremely positive lip biopsy in 2016. Sometimes appropriate biopsies are the only way to diagnose both Sjögren’s and Lupus.
But regardless of further tests it might be a good idea to just refer to whatever you feel is going on as likely connective tissue disease or autoimmune rather than fixing on Lupus. CTDs are a family of diseases and some of us sit clearly on one part of the spectrum where others sit undifferentiated across several. Maybe you’re in the latter group?
I'm sorry to hear that you have been struggling to get a satisfactory diagnosis and treatment plan despite your symptoms. As we're not medically qualified here we cannot advise you whether you may have lupus or another condition, but if you aren't satisfied with your current diagnoses then I would recommend seeking a second opinion. It may be worthwhile getting referred to someone with a specialist interest in lupus and/or connective tissue diseases by your GP. If you'd like to let me know whereabouts in the UK you are based then I would be happy to provide you with information about any specialists we may know near to you.
If you'd like more information and advice about getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...
Hi Paul, thank you for your time. I am actually supposed to see another rheumatologist in october for a seond opinion, however this has just been cancelled and I have now been put on the waiting list again.
One of the best places for experience with lupus in the East Midlands is probably Queen's Medical Centre in Nottingham, if you are able to get there. The lead consultant and lupus specialist there is Dr Peter Lanyon.
Hi Paul, I was referred to QMC initially but the consultant I saw brushed off my claims and without further ado diagnosed me with FS. She wouldnt look at my journal and completely dismissed photographic evidence.
I'm sorry to hear that. It does sometimes depend which consultant you may see and what their specialist interest is. If you wanted to try a different hospital you could ask for a referral to Dr Waji Hassan
Dear Loopy71, I am struck by the fact that your facial rash looks very similar to mine (diagnosed with severe systemic lupus in 2012) in that it follows the classic butterfly pattern across each cheek and down the nose. Significantly, for me it is also around the base of your neck. I refer to it as like an unwelcome necklace which is both sensitive to heightened disease activity and sunlight. You only need 4 out of 11 as you well know, with oral ulcers being a classic. However, in the latest study in 2017 in the US, 54.1% of patients were failing to be diagnosed (told that there was nothing wrong with them or that their symptoms were psychological) regardless of whether their lupus was mild, moderate or severe. Indeed, the study found 13.3% of the group had symptoms that were "life threatening". The latest study in the UK found that it was taking an average of 6.4 YEARS to diagnose lupus. The upshot of this is that, in my opinion, you need a second opinion in order for you to get the protective medication that you need. Professor D' Cruz seems to have an excellent reputation on this website. Barnclown will give you further advice on this avenue if you choose to pursue it. As to my credentials to offer my opinion to you, please see my profile for further details. However, above all know that you are not alone in struggling to get a successful diagnosis, indeed, it is commonplace. Wishing you the very best, with my warmest regards, Lily
Usual story for so many of us, I am afraid. I think Paul’s advice is wonderful - get yourself another opinion. I used to think I was speaking Martian until I found a Consultant that actually knew about auto immune and all the symptoms ! Good luck.
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