Test Results Came Back, letter from rhuemy,confused!

Hi All,

So my rheumy sent my GP a letter today and I've just received a copy. This is what it said...

Mentioned my strong family history of autoimmunity then some of my symptoms, positive antiphospholiphid antibodies, livedo reticularis, forgetfulness, myalgia and intermittent chest pain and breathlessness.

She has been having headaches for a year, they are not migrainous. Had a photo sensitive malar rash for a year, oral ulcers for a year but no nasal or genital ulcers. Dry eyes for six months and uses eye drops.

She has had intermittent drenching night sweats for a year. She has also developed intermittent chest pain which lasts a few days and occurs about every two to three weeks and resolves. This was associated with breathlessness. She has also been investigated as an inpatient and outpatient for intermittent right iliac fossa pain, for which no cause has yet been found. She also suffers from recurrent UTI.

''I have told her that she does not have antiphospholipid syndrome as she has not had a documented clot. I have completed her autoimmune screen today.

She has mild livedo reticularis on her arms and legs, but she has told me that this can become much worse at extremes of temperature. She has arthralagia of her hands and knees with some swelling on the small joints. she also has intermittent hives.

There were no digital ulcers. capillary refil was less than 2 seconds in her upper and lower limbs. Her peripheral pulses were palpable. She has bilateral carotid bruits. No synovitis and no vasculitic lesions.

Cardiovascular examination revealed an ejection systolic murmur loudest at the aortic area, which may radiate into the carotids. Her JVP was not raised. There was no pedal oedema. Respiratory examination was normal apart from a possible left pleural rub. She has mild suprapubic tenderness on abdominal examination. Was tender on palpation of her thighs and calves and her straight leg raise was impaired because her thighs felt heavy. There is no sphincter disturbance.

A urine dipstick revealed no abnormalities. I have requested a protein to creatinine ratio. I have requested chest X-ray and CTPA to rule out chronic thromboembolic disease. I have also arranged an MRI scan to her brain and cartoid arteries.

Lupus anticoagulant is negative, ana is negative and anca is negative.

Her B12 is now normal, her ferretin is normal, her full blood count is normal although she has had intermittent neutropaenia in the past. Her liver function and renal function is normal with a creatinine of 54. Her ESR is 7 and CRP is 2.

Her Vitamin D is normal as of may this year at 61. Her anti-smooth muscle antibodies were weakly positive. Her antimitochondrial, liver, kidney antibodies and gastric paretial cell antibodies were negative. She has had a normal ultrasound scan of her pelvis.

(goes on about family history again)

I note that investigations have found her to have postive antiphospholipid antibodies in particular igG titre was raised at 55, normal range 0-10.

Her IgM anticardiolipin antibodies are normal at 1, normal range 0-7, her anti-beta-2 glycoprotein 1 are more than 100, normal range 0-6.

Sorry I know this was a really long post but can anyone explain any of the findings to me? i'm so confused by all the jargon!

3 Replies

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  • Hi, I am diagnosed with aps tho never had a clot. I am 'strongly' positive according to rheumatologist at 260?! Am positive lupus anticoagulant and beta whatever!

    I am on treatment despite no history of clot etc.

    Ur dr has been very thorough in their examination which is good but still very frustrating for u to feel u don't know any more than u did!

  • Hi Hnewman2,

    I'm afraid that we cannot interpret these results for you because we are not medically trained and it would not be appropriate. I would recommend that you make an appointment with your GP so that you can discuss the letter and what the next course of action should be.

  • Information links. I hope you might find something helpful here.

    hughes-syndrome.org

    healthunlocked.com/hughes-s...

    aps-support.org.uk

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