I have tested positive for ANA and ds-DNA several times but always negative for ENA through NHS. I paid for a private blood test that gave me a titre 1:320 and speckled pattern but my rheumatologist refuses to see me again after fibromyalgia diagnosis. This year I paid to be seen by a private dermatologist who has diagnosed me with cutaneous lupus after doing a biopsy. I’m getting really frustrated as I have many symptoms of SLE but can’t seem to get diagnosed. There is a lot of auto immune diseases in my family. My granny (dad’s mum) had SLE. She also had under active thyroid and my mum and daughter both have too. My sister has Crohn’s and my nephew (sisters son) is a celiac. Arthritis and rheumatism also known in family members. Would I be right to push for another diagnosis or accept fibromyalgia and cutaneous lupus?
I’ve been diagnosed with all of these illnesses over the years;
IBS
GERD
Osteoarthritis
Allergies
Hypertension
Blepharitis
Eczema
Contact dermatitis
Depression
Anxiety
OCD
TMJ Dysfunction
Chronic Migraine
I’ve also got a sliding hiatal hernia and over 30 stomach polyps (probably due to medication over the years). Suffer from earache and swollen glands constantly. At the moment I self inject monthly for my migraines after having Botox for several years (wasn’t working anymore). Also receive B12 injection every 12 weeks. Currently on omeprazole and several BP medications. Stopped all other meds for now.
Feel like I’ve been hit by a bus everyday and the ongoing itch over my whole body is now sending me over the edge.
Hoping that I’m not the only one with their head up against a brick wall.
Thanks
Written by
ForeverIntrigued
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Hi ForeverIntrigued and welcome! Sorry to hear you have been having such a rough time, both with illness and with diagnosis. You certainly have a lot of AI-type diagnoses, and I can relate to having many of the things you describe: TMJ dysfunction, sliding hiatal hernia, skin issues and mental distress.
Diagnosis for lupus is notoriously difficult and takes an average of 5 years to secure. Mine took 8 years. They have to test for many things and rule stuff out before they will look at lupus; even rheumies are typically (and frustratingly) reluctant to diagnose lupus.
Can you get a second opinion? My first rheumy refused to diagnose me too, despite positive bloods and an array of lupusy symptoms. He was brilliant but ultimately unhelpful. It was only when I sought a second opinion with a rheumy who repeated the bloodwork and looked over my whole history that I got the diagnosis. See if you can get a word-of-mouth recommendation for a good rheumy. Hang in there; many of us feel your pain and can relate to your struggles!
Thanks so much for taking the time to read and reply. My issues started as a child (low immunity) being unwell constantly. I had glandular fever aged 15 (almost 40 years ago) and things got worse since then. I requested my medical notes (private dermatologist suggested to) and found issues with my bloods since aged 15. The problem being that I only have access to a couple of rheumatologists on the nhs, they seem to stick to what the other says. In 2017 I saw a lovely female one that diagnosed me with fibromyalgia ( my GP had previously diagnosed me in 2014) and said I only needed a couple more symptoms for her to diagnose me with SLE. My GP referred me back with more symptoms in 2020 but the male rheumatologist wasn’t interested at all. He said it was just the fibromyalgia without even examining me. I’ve recently been to my podiatrist as I’m now having issues with my feet/toes and she said this was normal in lupus patients. She also said that my family needed to be looked at as a whole and not individually and told me to read up on Ehlers–Danlos syndrome, which I did and it makes so much sense. My nephew and youngest son both have hyper mobility syndrome. My son actually has it all over his body (as told by physiotherapist). I also forgot to add that since getting my tonsils out at aged 43 I’ve struggled even more with fatigue, joint pain, earache, migraines and swollen glands.
I’ve paid so much money for the private dermatologist (she’s ex NHS) and not keen on paying more for a private dermatologist as they usually are the same ones that work for the NHS at my local hospital. I can’t get private healthcare due to so many ongoing health issues so definitely would need to pay.
Sorry for such a long reply but trying to get the info in as long as I’m remembering (fibro fog) and it’s got a lot worse since Covid immunisations!
EDS makes sense too, it has many overlapping symptoms with lupus. I’ve looked into it for myself, as I am also hypermobile. Ultimately, lupus was a better fit for me, but see what you think fits better for you. Family history is definitely worth taking into consideration. EBV plays a part in it, and it’s a known cause/trigger for lupus.
Sorry to hear the NHS situation is so unhelpful for you and that private doctors are inaccessible at present. It’s so hard to find the right doctor, isn’t it? Sorry to hear about private healthcare too; can you really not get private healthcare if you have ongoing health issues? I would have thought those with chronic health issues need it most! I have private health for myself, but then I’m in Australia, so I’m not sure how the rules differ over here.
All the best FI, feel free to post here as much as you like! 🌻🌈
Yes the EDS does seem to fit my family. All got issues with our skin too. At the moment I’m struggling to find a geneticist 🥺. I haven’t mentioned my little nieces cancer yet. She was diagnosed with rhabdomyosarcoma in 2019 aged only 19 months. Since treatment she has been left with lymphoedema and has many surgeries to undergo. It’s a very hard subject to talk about 😢.
I’m in the process of sorting out life insurance etc before any other diagnosis as I’d likely struggle to get that too. Living in the north of Scotland has its limitations I’m afraid. I’ll continue to research as much as I can and hopefully get answers and results.
I have negative bloods except once had a positive dsdna blood test. I was then diagnosed with lupus straight away. I was diagnosed with sjogrens disease with no positive bloods at all. Find an autoimmune specialist rheumatologist and get another opinion.. a lot have to pay privately but it's worth it. You get medication and monitoring. Fibromyalgia is often a lazy diagnosis and a way of discharging you with not much follow up care. It's worth another shot with another rhuemy to find out for sure. Negative bloods are not unusual and shouldn't be the only diagnostic tool used. Dsdna can go up and down and every hospital uses a different measuring scale but a positive at your hospital should have been enough. Keep on pushing and good luck.
Thank you so much for reading and taking the time to reply. This has been a hard thing for me to do (posting on here) as I struggle reading and concentrating and it all seems so much effort when feeling totally drained. It’s also very hard for me to open up but I really need help and advice from those that understand. Looking through my medical notes I also came across a positive test for smooth muscle antibody (was never told about it) but as far as I’m aware it’s ok now.
Please see my reply to MusicalFurbaby with other bits of information I’ve remembered 🙈
Hi again. I have joint hypermobility syndrome too. That adds to fatigue. Its not just fibro that fogs the brain, Sjogrens, Lupus, in fact any autoimmune condition causes brain fog I've realised. Add to any of them menopause and you have a recipe for an explosion of symptoms. I was only eventually diagnosed after years and years because peri menopause and then menopause put a rocket under all my symptoms and made them very clear. It's tough getting a diagnosis. Look after yourself. At our age its not normal to be so exhausted all the time and have joint pain etc like we do so hopefully you will get more answers and the right medications and advice and be properly looked after, just don't give up. Just make sure you see a that specialist Rheumatologist (not just any Rheumy) (See Lupus UK if for Lupus specialist hospitals and see if you're near one). So many Rheumys have little experience of Lupus/Sjogrens etc. that they really are a waste of your time more often than not as they need check sheets etc. and you have to fill all the boxes whereas a specialist will notice even subtle signs and know what they're looking at. I do hope your journey ends at a satisfactory conclusion.
hi, thank you so much for your encouraging reply. I will definitely look into a lupus experienced rheumatologist as I think it’s a must now. Will attend my appointment tomorrow with the private dermatologist and see if she picks anything else up with my medical records. Wondering if my constant low eos levels means anything along with certain bloods and symptoms.
I had many symptoms appearing in my 50s. and then got other symptoms like photsensitivity after covid infection, pre vaccination, early in pandemic when in my early 60s. Covid infection seemed to affect trajectory, Vitamin D level was low.
After being turned away by local NHS, as bloods probably not sufficient, was diagnosed with Undifferentiated (or Undefined) Connective Tissue Disorder, through second opinion, and treated with Hydroxychloroquine (av. 300 mg per day) that got rid of most of my symptoms. I still needed short courses of steroid twice, so second antimalerial Mepacrine (50 mg three times a week) added.
This page by Dr Donald Thomas explains connective tissue disease diagnosis a bit.
My take is diagnosis may have changed since the 2019 SLE EULAR / ARC Research Classification Criteria came into being.
Intended only for research some may be using to diagnosis.
This means the more than 4 of 11 symptoms system might not be being referred to. I found this confusing when local NHS turned me away, because of all the symptoms I had.
There could be more research on factors affecting diagnosis journeys.
Where we live, age, when we got diagnosed, health insurance, access to repeated tests, ability to travel etc.
The main thing is getting treatment to stop symptoms and prevent organ damage.
I tell people I have a lupus-like condition, as calling it UCTD does not work. I find the phrase lupus-like useful as it easier for people and I say things got worse following covid, and they understand this too.
Being able to explain to others and finding support is important. Life has improved on treatment, getting regular exercise and trying to keep an anti-inflamatory diet.
Thanks so much for reading and replying. I can definitely relate to things getting worse since covid. I can remember being ill a lot as a child (caught everything going) and I worsened after being diagnosed with glandular fever in 1985. Reading through my medical notes this was shortly after getting my rubella immunisation which I seemed to have taken a reaction to. I had abnormal blood work but it wasn’t taken any further. I guess it had been put down to the reaction.
I’ve just read the link you gave and it’s an interesting read.
I’ve noticed I’m struggling more and more with an overload on my sensories (can’t even stand hearing my husband breathe 😳). Feeling nauseous with smells constantly and can barely cope with even clothes touching me. Not sure if it’s an age thing (almost post menopausal). Most days I feel like I’ve totally just lost the plot. Photosensitivity has been getting so much worse even during the winter months. Sun cream on every day now even if I’m just in the car.
I’ve replied to both my replies above with other bits of information I’ve remembered.
* Got follow up appointment with private dermatologist tomorrow so will update after that
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