Confused 😖

Well here goes...I spoke to hosp today and receptionist informed me that this female rheumatologist has written me a letter stating.....yes I have had 2 positive lupus tests but I don't have sle or lupus???? Can anyone shine some light on this at all. I don't have this letter and don't know all that's in it. But surely all this I'm going through with my fibro me raynauds and migraines and body and joint pains having to use wrist splints etc and now with loss of hair etc that surely there's more to this!! 😢 Doctors know nothing about lupus but rheumatologist have given me two positive results and discharged me. 😤


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10 Replies

  • I suspect you have had 2 positive Lupus Anticoagulant tests which means you have the antibodies for APS which is an auto immune blood clotting disorder. Unless you actually have clinical symptoms (e.g. DVT, PE, history of miscarriage ) then it's something to watch out for but not necessarily be treated for yet. It is not a test for Lupus SLE as such. Why was the test done? Maybe ask this on the Hughes Boards and get a copy of your test results to get another referral.

  • Test was done as I have livedo retcularis, raynauds and fibromyalgia. Also have swollen sore joints in hands feet hips and legs. Have done for yeeears. I have ongoing problems so was sent to rheumatology who then took the two tests for lupus. Since the tests my hair have me snapped bad and been falling out and my pains have got worse I'm using wrist straps now

    Thanks for the message. Seems bit clearer now. Thank you. Will see Gp tomorrow see what letter actually says in the system as I won't get it for another week 😖

  • Ok. It does sound like APL. Some Drs will treat on those symptoms but not here in Australia.

  • What is apl? Thanks

  • APL means you have the antibodies that people with no other symptoms may have as well so it's a matter for of working out who needs treatment or not.

  • I checked and I got a letter last week about that and I'm safe and not at risk of blood clotting. Thanks

  • Most rheumys stick to a list of criteria and although fibro and raynauds etc may be frequently seen they are not on the list. Positive ana and lupus anticoagulant and part of the list puts you as a might be, maybe. Its all quite confusing according to where you go. Ask for a copy of the leeter and then go to your GP for an explaination.

  • Hi xSarahx,

    Do you know which tests they did for lupus? It may be that you have some positive results that suggest lupus, but do not currently have enough clinical markers to confirm a diagnosis. Do you have an appointment with your consultant coming up so that you can discuss the results and what the next steps are?

  • Hi. Heading to my gp tomorrow. They have letter on system as they get it electronically. Will hopefully know more then. Will drop a post once I'm back 😄

  • Hello. Yes, get a copy of the blood test results and let us know. Re lupus, we'd need to know ANA, ENA, Anti-dsDNA. My GPs surgery don't mind giving me copies of my blood test results - I just pop into reception and the receptionist prints them off there and then. But recently they started charging £1 a sheet and my bloods are always 2 sheets. 😬 Anyway, get those results and get back to us so we can hopefully be more helpful. Wendy

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