APS confirmed but GP has diagnosed lupus.(I asked for printed results)

[Billie-Jo79]

Hi, Firstly I would like to apologise for posting and disappearing last time after you were all so lovely. I have had lots of confusion with results so I didn't want to be wasting time if it wasn't actually Hughes. I was wrong and I should have stuck around and listened!

So, back in November I had my first positive lupus anticoagulant test and was called to the doctors for a repeat. This test was contaminated so had to be repeated Christmas Eve. I was told it was negative when I rung the GPs receptionist (BIG mistake) I've been really unwell so following advice here I asked for a repeat. Also told it was negative by reception.

I've been getting progressively more poorly and I have seen an already made appointment with a brain surgeon for a vascular issue. A large loop causing very loud pulsatile tinnitus. I told her that I have been trying to get a new diagnosis for my"fibromyalgia" as I have never believed that this is what I have. I've recently also started having to walk with a stick as it's a real struggle. My home is being fitted with rails, shower stools and various other disabled aids in the coming weeks.

Anyway last week I feel worse just so very very tired I couldn't get up. Then my feet swell up to twice their normal size, quickly followed by my hands. Trouble being I am on holiday in Spain. Saw a medic who prescribed frusemide. Then comes the rash. Dark red spots on my legs in circles and a lovely big bruise. We bring our flight forward as I feel uncomfortable and ill anyway and we were just worrying.

Still with me?! So I got back yesterday and go straight to the GP as I have rung ahead for my Mum to get me an appointment. It turns out that all 3 of the tests have been positive. He didn't know why the reception had told me otherwise. He had printed out the latest results and I asked for it to take away. It's all a bit confusing to be honest. He kept saying I have lupus. When I know that lupus anticoagulant means APS. Which is what is on the form. So anyway urgent referral back to the same Rheumatologist that diagnosed me with fibromyalgia. And re-confirmed that diagnosis when I asked to be retested in October. (tested for inflammation as a whole)

I'm worried I will be waiting for a while as I have been given nothing to thin my blood and I am all swollen up and basically worried I might have a stroke! Attached pictures of swelling and rash...

[Billie-Jo79]

oops could only do one pic the rash is on my legs and is dark red circles, both legs. GP prescribed double base cream for the rash but that was all.

[daisyd]

If it was me I would make an appointment with a GP today take a print out of the Hughes information and explain you are worried about having a stroke, hopefully they then might at least give you Asprin 

[Billie-Jo79 in reply to daisyd]

Thanks Daisy. I'm just reading over my results here and it says "Lupus confirmation (DRVVT test with concentated phospholipid only performed if the lupus screen is positive) So does this mean I have lupus as well?

[Billie-Jo79 in reply to Billie-Jo79]

There's a whole lot of numbers and stuff before and after those words. My GP just kept saying you have lupus.

[Lure2]

. Hi,

We are no doctors here but one thing I am sure of: you need an urgent appointment with an APS-Specialist!  As you have got other diagnoses today you should see a Rheumatologist as APS and Lupus and Fibromyalgia are all rheumatological illnesses but APS is also a blood-disorder. It must be a Specialist of APS though!!

I guess they do not understand (especially the receptionist) that Lupus Anticoagulant is APS not Lupus. Ask your GP for a referral to one on the list here if you live in England. 

hughes-syndrome.org

I would certainly go immidiately to A&E if I was so swollen. Ask GP if you can take baby-Aspirin (75 - 100 mg is enough) at once as that is the first drug you get when you have got APS unless a Doctor do not think you need Warfarin or some other anticoagulation drug.

The neurologist we have found here do not "get" what APS is about  -  too thick blood that need anticoagulation to protect us from clots, PEs, DVT etc.

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

Hi it is vital you see one of the recommended specialists: hughes-syndrome.org/self-he...  your GP must help you and urgently.  Keep the list with you in case you need hospital.   MaryF

[SueLovett]

I despair. Why do we have to go into battle all the time. You poor thing please go on Foundation website as suggested and go back to GP ASAP.  Unfortunately, in my experience, they are clueless in A&E as well. Let us know how you are.

[Lure2 in reply to SueLovett]

Hi SueLovett,

What is GP ASAP?

Kerstin in Stockholm

[cpndrake in reply to Lure2]

general practitioner (doctor) asap =as soon as possible

[Lure2 in reply to cpndrake]

Hi and thank your for the translation!

Hope we will hear more from you. Keep well!

Kerstin in Stockholm

[SueLovett]

As soon as possible, abreviation we use in UK.

[Lure2 in reply to SueLovett]

Thank you SoeLovett!

Thought GPASAP was some drug or something. 

Kerstin

[SueLovett]

When I invent drug to cure us all that is what I shall call it. Ha ha Sue

[Billie-Jo79]

Hi sorry to bump my post I'm not sure of the rules! I posted regarding my appointment with Dr Vanessa Martlew at the Royal Liverpool hospital on Wednesday coming. Im just curious if people think it's useful to take photos with you? Like this one of my feet in March? X

[Lure2]

Certainly it can be useful for her to see a photo of those swollen feet!

I have done that myself once to my Rheumatologist.

Good Luck from Kerstin

[Billie-Jo79 in reply to Lure2]

Thanks Kerstin. I have pics of a rash that appeared on my legs and other bits as well. I guess visual aids will all help paint a picture. Thanks so much for all your help. As the appointment gets closer I feel myself getting anxious! You're lovely. Much appreciated. X