SOooo nearly a month ago my thoracic consultant decided after my full history to test me for Lupus - because my lung problem didn't tick the boxes of anything else. I have nearly every single symptom on the list that doctors look at and many that aren't on, and Alopecia, Raynaud's which has been witnessed by GP, EDS and endometriosis which I've had for many years.
To cut a long story short, my lung specialist ordered the lupus related bloods, looked at them, decided I needed to see a Rheumy asap, so said he would forward them to my GP so they could refer me. This was nearly a month ago. The letter and results have still not arrived at my GP, I've been calling three times a week and saw the GP ...again!... today.
She point blank refused to refer me to a Rheumy until she'd actually SEEN a positive ANA result. As far as I am aware from reading up, ANA isn't even positive all the time? And there's even serum negative lupus! Why is she refusing to refer me until these 'lost' results get found?! I'm really struggling and beginning to lose hope of ever getting help
It's already been such a long battle (from the age of 12 and CFS diagnosis to here) and I wasn't even flaring when I had the tests so I'm really not hopeful about the results. I'm getting more and more exhausted and ill and really don't know what to do now..
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Blueberry
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i might suggest you find another doctor to see you or phone the hospital back, and speak to the doctors secretary, she should have a copy or be able to look at notes, i have had r/a and lupus for 24 years and only had 1 positive reading A N A test, they do say that if you have more than 7 of the listed syptoms it is a likeihood that you have lupus. but you really need to get a diagnose
nevermind lost results!! tell them you want them doing again,the amount of urine samples that they have lost of mine is unbelivable,u think how can you lose a bottle of wee?? i have also heard that not all people with lupus have positive ana and vice verser, i know they always are testing my dna antibodies,that is something to do with how active the lupus is,it was very active when i first got tested,when you have the tests again tell them to explain the meaning and results of everyone-i did good luck xx
Poor you ! forgive me but your gp sounds a bit crap !!!!
I'd definately change!
Its ridiculous all this waiting around when you're feeling so ill.
Good luck x
hello blueberry
just to let you know that i went to my doc so many times with so many complaints which caused me so much stress, it was such a battle to get him to listen that after 10 months of trying i decided to try a different doc in the same surgery and see if he would at least listen,well he did and he took bloods straight away and within 2 weeks i had postive results and a referral to rheumy and i wished i had changed docs earlier.
The saga is continuing it doesn't even show on the electronic system that I had a blood test - never mind my notes from my specialist appointment - there is only 'attended clinic' - not even my spirometry results. Saw my Gp on Tuesday and she phoned my specialist's secretary 'we don't have any blood results here for that patient and I wasn't made aware of any requests to be sent to you for referrals' (!!!!) GP said on Tuesday she would call haematology to see if they had my results, she said she'd call me straight back when she heard what they were. It's now Thursday
If I didn't still have a little bruise I would be beginning to wonder if I'd imagined the whole flipping thing!
I remember off by heart most of what was on the form too - ENA ANA ERS Renal function, FBC, and two more I've forgotten. Gaaaah. Maddening.
I wrote about ANA in another post (blood results - I think it was titled ? - refer there).
Repeat the tests. Your results will vary.
AM blood draws v. PM blood draws v. fasting blood draws v. blood draws under stress (in Emergency during a flare up) v. ...
All ping up down all around.
This is why a 'lupus-like' patient is monitored ... FOR YEARS.
This is why the Doctor/s 'interpret' the counts.
Medicine is not a perfected science. Humans are all individuals. Especially in the case of lupus or lupus-like patients.
Eliminate the stress. Avoid the conflict. Dismiss the confusion. Repeat the tests and be done with it. There is no time to bicker with a faulty medical office staff or missing result. This is your life and the quality of your life depends upon how your symptoms can be managed or eliminated. They dropped the ball - big time. So be it - what is done is done. Move forward, repeat the tests, and hopefully gain some peace of mind.
Please take care as best as you can. Positive thoughts to you.
Problem is the NHS is a total farce - the GP wouldn't agree to repeat the tests...they're just pretending to look for these lost ones. Sigh! I can't really do much about it except keep going to annoy them!
We don't really get much directive power with the NHS I find, we're the little patients and they know what's best. I guess maybe I can try a different GP at the practice...being sat in limbo like this for weeks is just silly isn't it!! I'll be back at the thoracic consultant's clinic before they've done anything at this rate!
They don't seem to be monitoring me, rather they're trying to sweep me under the carpet so they don't have to deal with me ....grrrrr!
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