PART TWO OF MANCHESTER REFERRAL: Hi again. The... - LUPUS UK

LUPUS UK

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PART TWO OF MANCHESTER REFERRAL

Footygirl profile image
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Hi again.

The blood tests show

CRP 3 ESR41

Hb 109 MCV 78 WCC 6.1 Platelets 423

Ferritin deficient 5.1 (7-90) normal B12 and folate

Renal function normal eGFR 79 normal u. Protein creat ratio

Lfts normal but GTT raised 51 6-42

TFTs normal and bones normal

CK normal 77

ANA pos with Ro antibody<8

RhF, CCP, dsDNA, Lupus coagulant, anticardiolipin and C3C4 complement negative/normal

Atypical ANCA present (pANCA pos but MPO and PR3Negative

I munoglobulins show polyclonal increase on electrophoresis

Normal vit D 80. 2 (yippee)

She found it difficult to comment on results. Antibodies fit with SLE but also fit SJORGRENS which would tie in with dry mouth and polyclonal increas in immunoglobulins.

Although ESR raised no suggestion of Lupus activity. Bottom line THERE IS A CONNECTIVE DISEASE, COULD BE LUPUS OR SJORGRENS but no indication at present to add more treatment and her original recommendations stand.

Worth noting low ferratin and mild microcytic anaemia.

She leaves it in GP hands to investigate further !!!!

GP ACTION

REF FOR PHYSIO/OT FOR FYBRO MANAGEMENT

TRIAL OF GABAPENTIN OR PREGABALIN as before

Trial saliva substitute or pilocarpine

Experiment with artificial tears

Review ferritin deficient anaemia. END

Well me hearties, I certainly got what I asked for and Im pleased with that.

Bit miffed she bottled out calling both Lupus and Sjorgrens, I believe I have both. Wondering about Haemolytic aneamia as red blood cells not good. Azathioprine can damage red blood cells at formation. Debilitating tiredness on top of usual fatigue a subtly difference but very telling.

Problem: got to see reluctant GP in a couple of hours. You will recall his exclamation previously that he does not get/see reports!

I think my plan is to first ask for report of barium swallow (a friendly gastro gave it to me on my Liver review). Nothing but a bit of reflux. Well yes, cos fluid not food which continues to stay in oesophagus for ages. Think again.

Second the fibro medication

Thirdly aneamia investigation.

I have also just developed swollen ankles and my right leg seems to be slightly bigger than my left suddenly which are all new this week.

As always your imput, views much appreciated guys.

This is part one and two. Whether my GP can be bothered to pick any of this up we will see this afternoon.

OVERALL. BRILLIANT RESULT. FULL INVESTIGATION WHICH WAS WHAT I HAD BEEN ASKING FOR FOR MONTHS. RESULTS, HM FEEL SHE FELL SHORT OF DEFO DIAGNOSIS BUT HOPE RHEUMY MAY DO SO NEXT MONTH when give her the test results though maybe not the letter! FEEL VINDICATED FOR DEMANDING REFERRAL.

IF I CAN DO IT SO CAN YOU!!!

Will let you know if GP gets off bum.

Love ⚽️

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Footygirl
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Barnclown profile image
Barnclown

HURRAH 🌟🌟🌟🌟🌟👏👏👏👏👏

CONGRATS‼️‼️‼️‼️‼️

Following on from your previous post today, many thanks for these details too dear footy ⚽️

Am imagining you busy processing this info...if you're anything like me: I always need several several weeks to mull this stuff over before I feel as if I more or less 'get' it

You are definitely right to feel VINDICATED!

Am DELIGHTED for you!

And am wishing you 🍀🍀🍀🍀 ongoing...

Hope you'll let us know how things went at your appt today...

💐😘

in reply to Barnclown

Agree totally with Barnclown as per usual! Now going to read your next post. X

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