IGG APS / IGM NOT. HELP: Hi all... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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IGG APS / IGM NOT. HELP

dexters
dexters

Hi all

Recently diagnosed by stroke doc.

anticardiolipin igm 132.8

anti-b2GP1 igm 121.9

lupus anticoagulant positive on two occasions. so triple positave?

platelets 142

saw a Rhumy. yesterday she said igm does not count for aps so only one out of three, take an aspirin goodbye, not interested in any other symptoms ,but will do a nuclear bone scan. Wife asked about heperain trial Rhumy. said no unless you had a stroke, wife replied closing gate after horse has bolted.

Is it correct that igm doesnt count for aps cant find anything saying such.

Hope you are all ok as can be

Regards Dexters from Wales

12 Replies
oldestnewest

What did the rheumatologist say about the first stroke? They are just able to establish APS guidelines after doing lots of research. They look at whether the clot was arterial or venous, what the antibody level is and how many are positive. It is way too complicated for me to understand. Aspirin is a known effective drug to prevent clots. I think you need to feel confident that is the best drug for you. Could you see an APS specialist? A neurologist could be helpful for migraines and the many neurological symptoms. Hope you get on a hood track soon. KH

KayHimm
KayHimm
in reply to KayHimm

Sorry, I misread your post and thought you had had a stroke, which would have been concerning. What they do is called « risk stratification. » My guess is they think the risk of Warfarin is greater than the risk of a clot. Your other APS symptoms need to be addressed too. There are other medications, and they can increase your aspirin. Try to find an APS specialist and neurologist who understands APS. K

dexters
dexters
in reply to KayHimm

Hi KayHimm

Thanks for your reply, risk stratification yes they do calculate risk but Graham Hughes has done a heparin trial for 2 weeks many times i think litigation is affecting the medical profesion at the moment. I will be seeking an aps specialist.

Regards Dexters

KayHimm
KayHimm
in reply to dexters

Can you see a colleague of Professor Hughes? I actually do not think it is a question of litigation. They are trying to practice evidence-based medicine. But they have to look at you as an individual. Sounds like you are not doing well on the aspirin alone. K

KellyInTexas
KellyInTexasAdministrator

Your Rheumatoligist is getting too hung on if the Abbreviations for the big picture at this early stage of the game.

( yes. They do matter, but it’s a little bit of a smaller picture in this particular, initial moment in time with you. Some are slightly more prothrombitic than others, but those classifications are used to let a doctor know how recently your body has been exposed to an antigen. )

It really makes not “ at this moment” difference to you.

What matters to you is you are testing positive in very high numbers to aCL, B2GP1, and have tested twice positive for LA. Am I correct?

When you go to ghic.world/ and click in the tests , you will not read anything other than what I have just mentioned to you above. The other is too detailed and has nothing to do with diagnostics, it has to do with best practice management... once a diagnosis has been confirmed!

You clearly need to change you team very quickly to APS knowledge physicians. You have a wife with great analogies! ( we use that same phrase in Texas!)

Hi KellyinTexas

Thanks for your reply, i have been twice positive on all three but igm not igg , have been on ghicworld and other sites and they all state positive not igm or igg just positive. I will be looking for an aps specialist. My wife says thanks for your comment, but thinks a welsh cob (pony) would beat a Texan filly through the gate lol ha ha .

Regards Dexters

KellyInTexas
KellyInTexasAdministrator
in reply to dexters

So glad to hear - and MaryF has directed your search even more.

Welch Ponies! I don’t know a thing about them- I’ll have a great time looking that up!

We say, “ That horse has already left the barn.”

MaryF
MaryFAdministrator

Hi, to add to the replies you have had already, please travel to see the nearest Hughes Syndrome/APS specialist you can get to! There are some on the charity website, enclose by KellyInTexas and also some over on the right hand side of the forum under 'pinned posts'. Many of us have paid for a one off private appointment or a few to get our care properly back on track if we have had unsatisfactory appointments via doctors who only have half the information. I hope this helps. MaryF

dexters
dexters
in reply to MaryF

Hi MaryF

I will be seeking an aps specialist had to give local Rhumy a try, lesson learnt , i will be getting my wallet out annoying after working all ones life .

Is apsnotfab unwell not seen her post lately.

Regards Dexters

MaryF
MaryFAdministrator
in reply to dexters

Lynn has more than one profile, Sticky Blood Mentor being one of them. MaryF

Hi

I’m interested to know why and how you became diagnosed by a stroke Dr? Did you have symptoms resembling a stroke? What led to you being tested in the first place?

These answers may fill the bigger picture to a Dr who is well versed in APS.

I hope you have found an APS specialist local to yourself now and have booked an appointment?

Kelly 🇬🇧

dexters
dexters
in reply to Yllek

Hi Yllek

The best way to answer your questions is to have a read of My Journey i posted 16 days ago . There is an aps recommended specialist on NHS who my NHS trust is merging with in April my gp will refer me then. If you fancy a giggle have a look at The Patient Patient an ode to APS if you enjoy click like.

Regard Dexters South Wales

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