So, how did people here get their diagnosis?

I have been unwell for over three years. Longer if you count my stroke, migraines, joint problems etc.

9 years ago I had a strokr. 6 years ago my obstetrician diagmosed hypothyroidism. But for the last 3 years I've been at GPs weekly because I've just felt so awful. Supplements have been prescribed for anaemia, low calcium, low b12, low vit d etc etc. Last year when investigating TMJ a brain MRI was done confirming stroke and several TIAs. Bloodwork ordered on back of that confirmed APS and equivocal sle. So I looked sle up and realised all the complaints I have made are all lupus related.

In fact I have 8 of the 11 ARC list. And yet I cannot get treatment for sle. Rheumy says its possibly fibromialgia and APS but this doesnt make sense. She also confirmed I have osteoarthritis in my knees (but no inflammatory ra evidence in blood).

I am desperate now. Beyond exhausted and knocked out from any activity for days. I am on warfarin for aps, but need the rest taken care of. I also have, according to thrombotologist and GP probable lupus nephritis. Are they really going to insist on +ve bloods for sle or can I push for plaquinel which could also help aps too.

Sorry for rant. I have been ferling awful for so long, my body is falling apart, and I am fed up. Advice please.

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9 Replies

  • Hi bonnnie39, really feel for you as I have been there. I fell ill in 1998. Although lupus was probably there longer, it was from then, that I was last, 'well'. My journey to 2005, when I was diagnosed, was much the same as yours, just different problems. The one thing that was different to you was, they were not looking for lupus ! I had severe anaemia, thyroidectomy twice, rashes, temple arteritis, and a needless hysterectomy to cure the anaemia. It was when I was having iron transfusions, the haematologist took an interest in me. He ordered extra bloods which gave a positive ANA. I then got the ball rolling by paying for one off private consultations with rheumy and dermatologist. They put me on their NHS lists. The rest is history. It was my persistence that got me there, I would still be waiting and dismissed as 'crazy', if I hadn't. I would ask Paul or Haley, administrators, for a list of lupus NHS specialists near to you. They will diagnose you as a whole, not just bloods. Hope this helps.

  • If your gp thinks you have lupus nephritis has he /she sent you for a kidney biopsy to confirm or rule it out? Lupus nephritis is a serious life threatning condition, if left untreated. Wishing you well.

  • Thanks both. I am seeing the nephrologist on Thursday, as cystoscopy and CT scan have not shown a reason for the blood in my urine (sometimes seems I am weeing only blood with a toilet bowl looking like there's been a massacre!). I get UTIs (severe) every month a week before my period.

    I have Raynauds


    osteoarthritis in my knees


    malar rash

    painful swollen joints with "trigger" fingers


    extreme fatigue

    low calcium

    a history of plurasy


    mouth ulcers

    sores on my toes following a Raunauds attack





    history of low platelets

    ?nephritis of kidneys

    folicolitis in my scalp

    Lab results show

    mildly +ve ANA

    centromere antibody 7.0 (range 0.0 - 0.99)

    slightly low cholesterol inorganic phosphate 0.75 (range 0.8 - 1.5)

    lupus confirm ratio 1.25 (range 0.84 - 1.16)

    Alanine Trans level 39 (>30)

    Phosphate 0.8 (range 0.9 - 1.4)

    Hep2 nuclear pattern centrme

    Regardless of the bloods I reckon I have 8 of the 11 ACR criterion. Surely with those, regardless of the bloods it must be treated as lupus.

    It is not that I want lupus, but I do need to know what is making me so ill, and want it treated as it is stopping me functioning properly. Since I have APS confirmed I think a trial of plaquinel may be suitable?

    It is driving me crazy feeling so awful. :-(

  • Bonnie 39

    Feel for you also - it's quite a familiar story on here or so it seems :-/ I agree with 6161 - I was on waiting list for NHS all bloods were negative was told to come back in a year - declined rapidly, decided to get help privately. Was started with a steroid jab which helped, when it wore off I became incapacitated again so was put on a 2 week course then told to stop - felt much better but as soon as steroids stopped went down again. Was then put on hydroxychloroquine (planquinel) which I noticed an improvement in fatigue night sweats ulcers- still had bad flares - waiting for full 3 months for planquinel to work then planquinel was doubled and I was put on 5mg of steroids daily then 7.5 got to about 10 before I ended up on the stroke ward - neurontin was added then doubled - and now I've been offered methotrexate - the long and short of it is if I had not of gone privately I don't know what would of happened, I have been dreadfully ill- my rheumatologist decided to treat me - you need the same. I saw rheumy privately right up until I linked back into NHS which is where I am now - it's taken me 23 years so far. So never give up - but you need to keep fighting and if it means changing consultants then just do it if you can - I asked my Dr if there was a rheumatologist that he could recommended and that the Dr thought was good. Good luck - keep us posted - well wishes x

  • You ought to consider going privately - I was fobbed off for 2 years before I decided to push my GP to refer me to a rheumatologist privately and he diagnosed me at the first consultation on the basis of previous blood tests.

    Once I got the diagnosis, the GP couldn't be nicer to me.

    May I ask - other than strokes, do you have high blood pressure? And how long have you had the livedo?

  • Agree ptop, my GP was very, very, nice. Haha

  • How much does it cost to go private

  • Hi maggied54, I don't remember as it was some years ago. I know it was around the £100 mark, but am sure it is more now. What I found expensive were the blood tests. They were far more than the consultation. I have had Drs who suggest I give GP the list, to have my bloods done on NHS. It did cause problems sometimes, so I stuck with the private phlebotomist. You can call and ask for prices, so don't go by my figures.

  • I think I've had lupus for many many years the doctor jusy kept putting it down to depression and said all the symptoms were just in my head I was then diagnosed with osteoarthritis so my new gp sent me to see a rheumatologist and on the first day I met her she diagnosed me straight away even before the blood tests confirmed it I was diagnosed 3 years ago I'm now 50 in one way it was a relief to know I wasn't going mad but also scary as well

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