Lupus Anticoagulant Query- part 2

[Chris1802p]

Several of you were kind enough to offer advice on my last post, where I have had 2 positive Lupus Anticoag results, but my rheumatologist has dismissed it as I have not had any clotting events. So I sent him the email I have attached.

He replied, via his secretary, simply stating:

‘ I will discuss at her next appointment. The APS syndrome is defined by thrombotic events, which she has not had’

So that’s it. He won’t do the further blood tests, nor, I assume, would he refer me to an APS specialist. My GP is hardly likely to refer me either, as my rheumatologist obviously now thinks I’m just a hysterical idiot.

Bollocks 😞

[KellyInTexas Administrator]

Well,

The good news is you now have a plan!

( we won’t talk about the bad news. It involves saving some money and traveling a bit. But hey ho- at least you have specualists the UK! )

You have got to have a private appointment if you want to get to the bottom of this. The specialist will cc a new gP and Rheumatoligist.

Now. Someone else from the UK is going to have to come on here and clean up the bit of a mess I’ve probably just made here! ( I’m still a little awkward in navigating the finer points of your private/ nhs system. I know you can go private, then be transferred to that same consultant on the nhs.

[Chris1802p in reply to KellyInTexas]

Thank you Kelly. I’m just a bit worried about spending upwards of £500 on a private specialist at London Bridge Hospital only for them to dismiss me too!

[KellyInTexas Administrator in reply to Chris1802p]

Right. I see Natasha Jordan at London Bridge Lupus centre. My “ low yet positive “ titers go negative/ positive, but I did test positive twice in a row. Then got a clot ( DVT) straight away. But then went negative.... that caused one doctor on my team (Hematologist- not a specialist of APS) to question the APS diagnosis.

Strong symptoms, strong fam history.

My GP and Rheumatoligist felt very sure it was APS and my GP kept me on warfarin- and sent me to London. ( he trained there in internal medicine.)

My diagnosis was very firmly confirmed.

I now go in and out of pos/ neg, but now low to moderate titers. I continue to make new DVT’s at very rapid rates despite high inr’s.

She is a believer in sero negative/ sero positive. I know she understands micro clotting.

I do not know about other doctors in that clinic, I hear great things about D’Cruz.

Hopefully others will share stories similar to your own to help you choose your next move.

[Chris1802p in reply to KellyInTexas]

That is really helpful- your post has definitely given me more reason to try and see one of those two!

[Ozchick]

Take heart-there are a lot of hysterical idiots on here After a long and usually fruitless search I have a great Rheumy (he ultimately referred me to LB hospital when he found I was going to be in UK) who doesn't mind checking out my weird symptoms. I also have a great haematologist that I see 6 monthly after being dismissed by the first one as "hysterical idiot"

Touch wood! I have felt the best I have in years with only the odd brain fog and the odd joint pain. My drug regime does not suit everyone and even different doctors will disagree on what 'could' work (but doesn't)

Seeing a specialist is expensive (about twice or more than in Aus) but hopefully you will get the help you need soon.

[Chris1802p in reply to Ozchick]

Thankyou! Fingers crossed!

[Jillymo]

Dont put up with any more of this crap listen to the admins go private.

I were so desperate I paid for a taxi all the way from Swindon in Wiltshire to take me to London Bridge. Prof Hughes was still practicing then and I were luck enough to see him.

It was wonderful to talk to someone who did not diagnose on bloods alone he was actually interested in my symptoms and past history.

It was money well spent I can assure you.

Say goodbye to the hollyhocks and seek a firm diagnosis.

[Chris1802p]

Thankyou- you’re right of course. But because of that horrible dismissive reply I’m starting to doubt myself...all your replies have made me strong again 💪

[Chris1802p]

I will! Thank you x

[MaryF Administrator]

I do suggest you see another doctor, Dr Kaul at London Bridge is very good also. A lot of us have had to have private appointments with experts who fully understand this disease in order to get our care back on track. MaryF

[Chris1802p in reply to MaryF]

Great, another name I can try , thankyou so much

[Fra22-57]

I have never had a clotting event etc but I have APS and am on warfarin. My local rheumatologist diagnosed me but I asked to be referred to a consultant at London Bridge who specialises in APS. I see Professor David D Cruz there and he is fantastic. He sees the full picture. I always get examined and have tests.

I would ask for a second opinion and request who you want to see at London Bridge. It is your health and you have a right to proper diagnosis and treatment .do they give up

[Chris1802p]

Thankyou you so much

[Chris1802p]

UPDATE!!! I have an appointment with Natasha Jordan at London Bridge on 8 Feb!

Thank you for all your guidance and support! ❤️

[HollyHeski Administrator]

Let us know how you get on?

[Chris1802p]

I certainly will!