Hi I wasHi I'm new here looking for advice please 🙏 Was diagnosed with fibromyalgia in October by neurologist. However I've had joint pains evry day and stiffness worsening, ulcers in my mouth recurring to point I can't eat because of the pain. Dr ordered bloods 3 weeks ago and was ANA positive 1.100, but dsna binding and the other one were negative. My platelets are just over the high ref range 405 and have been going up each blood test. My folate is low below reference range 35, so given folic acid. I've had migraines for years, had mri showed multiple lesions on my brain, said more than expected for age (I'm 45) could be cerebral small vessel disease or from migraines apparently. I have ajovy injections for migraines now and helping. I get Pins and needles in feet and hands, I have underactive thyroid and been through some bad traumas in my life. My dad's sisters and my nan had raynauds, I'm tired all the time and could sleep forever. I get burning and numb patches all over, trigger finger, nausea and dizzynes and have fainted twice. I'm suspecting lupus because of the joint pains and mouth ulcers. Also years ago I had nephritis a few times and was peeing pure blood. However my egfr is always in normal range. I think I've been diagnosed with fibro but thinking it's actually something else. Just wondered how many of you have just been diagnosed with lupus from symptoms and ANA positive alone where the other bloods were normal. Thankyou for reading replies most appreciated 🙏💖
Think I have lupus after test: Hi I wasHi I'm new... - LUPUS UK
Think I have lupus after test
Hi Milesy, welcome to the group. its very hard to get a diagnosis on some auto immune conditions, Lupus it seems is one of the hardest. I had various problems for years with nothing definite on any condition including 2 negative results for lupus. when I did get a diagnosis of lupus sle, it also came with sjogrens, sticky blood and a few months later PBC.
I can relate to some of the symptoms you are experiencing but they also are very much like what boths my grown up daughters experience. one has sjogrens and coeliac. she is presently going through severe pain which the consultant has said is reactive arthritis caused by sjogrens, shes sleeping quite a lot too. The other daughter has raynaulds which can cause pain and hands/feet turning white or near black.
Have you seen a rheumatologist? it might be worth asking for a refferal. Im sure you will get lots of other replies here, hope some are helpful to you 😊
Thankyou for replying, I know it's a catch 22 kind of getting a diagnosis. Not nice for your daughter's bless them. Someone mentioned sjogren's to me. I have follow up call with Dr next Friday I'm going to ask her to refer me to rheumatology as either way this joint pain and stiffness is to much and last night I was close to tears with the pain. Thankyou so much 🙏🙏🥰
Hi,
So sorry to hear that you are experiencing this. I was diagnosed with fibromyalgia in March last year with the same symptoms as what you’re experiencing. I had 3 Lupus blood tests for which 2 were positive and 1 negative. The rheumatologist stated that due to 1 negative result it’s not Lupus. I have been keeping a diary and photos of my symptoms for which I will be providing g to my doctor.
I empathise with your struggles for a diagnosis whilst being constantly unwell. Please keep fighting those medical professions ensuring they listen to you.
With mixed result bloods ( like only a positive ANA, mine was 1:320) I think it is important to make sure hospitals to which one is referred, diagnose and treat 'lupus-like Undifferentiated Connective Tissue Disorder (UCTD)'.
I'm not sure they all do.
Possibly this is a management decision to discharge based on insufficient bloods.
The science is largely unknown and some hospital rheumatology departments seem to cling to blood test criteria that do not aways mirror severity.
This includes ESR which for some of us does not always get raised sufficiently. Issue is that medical training, textbooks, criteria and parhways used need updating urgently. This does not seem to be priority though.
(With those who could change things, if it was them or their families they might be more concerned. Sorry, but the situation makes me upset and angry. Not everyone is in position to afford private treatment, expensive rail tickets or to travel alone to other end of country when they are unwell. 🤷
...It is beyond me, why the situation is like this.)
I looked Fibro up and symptoms did not match mine. Symptoms in the wrong place and type.
No similarity whatever. (Strong positive ANA and most of the symptoms I had were in the previously-used 'more than four of eleven specific symptoms check'.)
My GP knew this too and said he would refer me anywhere in the UK to get the help I needed. I'm now being treated, very successfully elsewhere.
It was back in 2021 I was in the position you are now.
Finding a consultant you can trust is cruical. .
Dr Donald Thomas, author of The Lupus Encycloepedia, suggests better tests are available. Here is a link to a post with the video he did recently:
Thankyou so much for replying. I totally get what your saying. So many people could be treated far earlier and this would take a weight off the NHS if only a bit, due to freeing up many gp appointments we attend to feel like we get nowhere then end up in hospital due to illness because it's to late. That's my thought anyway. I'm going to start keeping a diary I think. I'm talking to gp Friday so going to ask her to refer me to rheumatology. Good luck hun it's sad people have to advocate for theirs elf's xx
Hey Judy to let you know, spoke to Dr today refuses to send me to rheumatology as I don't have a rash and apparently it's criteria!! I told her most people don't!! It was a bad consultation and I'm fuming right now, just feel like I'm suppose to feel like I'm dying everyday!! I said that to her she just said aww sorry if you get a rash or joints swell up then come back!! I'm livid 😩😩
Do you know which criteria the doctor was referring to. I get the feeling that many NHS Rheumatology departments have now adopted the 2019 SLE EULAR/ ACR Classification intended only for use in research but being applied to diagnosis.
Link below is to the table. There are two columns and only one item in each column is scored. Score of ten, if the left and right highest scoring items together, is required.
In left hand symptom column only lupus nepritis scores 10, so if score anything else like 6, then positive blood results on right side needed.
(You would hope that an Undifferentiated Connective Tissue Disorder could be diagnosed otherwise BUT suspect some NHS hospitals don't routinely accept referrals to check for lupus-like UCTD.
My local NHS said it could be a UCTD but that would be too difficult to diagnose in their clinic letter. Handy excuse and too much trouble for them. I had to go elsewhere to a hospital department that cared enough to diagnose and treat this.
it was private and I sorted it out myself without going through my GP.
My GP was concerned though and said he would refer anywhere in UK so I could get the help needed. I just reckoned all NHS hospitals might be like the local one though.)
hi Milesy,
I was given a dx of connective tissue disease while waiting for anti dna to catch up. After a year or so it did and I was given a firm dx of lupus SLE. Do you have facial rash?
Hope you feel better soon,
Terri
Lupus test?
POSITIVE ANA but negative antibodies.
Possible Lupus? 
Could it be Lupus ?
Test Results and SUPER confused
