Log in
Sticky Blood-Hughes Syndrome Support
8,549 members8,684 posts

Lupus anticoagulant

Hi

Im totally confused. I had a minor stroke that occured in my brain. After years of testing for neurological issues, memory loss, brain fog, cognitive issues. Tingling nerve issues, fatigued . Migraines

The initial diagnosis was MS. Than further mri ect it was lupus anticoagulant. Told sticky blood, read up on it and also named Hughes Syndrome. Or antiphospholipid syndrome.

I was recently tested and told no Antiphospholip syndrome. This dr told me that i was misdiagnosed. My last two drs said once testing positive thats it you it you always do. Please any advice would be appreciated

Karen 🙄

10 Replies
oldestnewest

Hi Karen .yes it is correct that once diagnosed you are that for life.administrators on here will give you lots of invaluable info and should answer you soon

1 like
Reply

Blood tests can and do vary. I suspect these doctors are not expert on APS/Hughes because if they were, they would also know that blood tests vary; there is also "sero-negative" APS/Hughes.

They should also know that diagnosis is based not just on blood tests buton clinical symptoms. How do they explain your clinical history or MRIs?

Does APS Go Away? (S.P.B, MD)

Not really--although, as with the other autoimmune diseases, its signs and symptoms may vary from time to time. There may be only one clinical manifestation of APS--one episode of deep-vein thrombosis (DVT), for example--and then none ever again; it can't be concluded that the threat is gone. All laboratory values for which we routinely test may even become completely normal and may stay that way for an extended period of time; that can't be taken to mean that APS has vanished.

Remember that the recognition of APS as a disease entity is relatively recent, and that it was only in 1998, following an international conference on APS, that the preliminary diagnostic criteria were formulated. I stress the word "preliminary"; those criteria are based only on data established thus far--which include only two clearly identified antibodies, anticardiolipin (ACL) and lupus anticoagulant (LAC). Other factors--including other antibodies--will almost certainly be recognized in the future, as research goes forward.

Meanwhile, anyone who has been diagnosed with APS--and his or her physician--should assume the persistence of risk and continue to take appropriate protective measures.

Source: apsfa.org/faq/faq5.htm

My recommendation: find a APS/Hughes specialist.

I don't know what anti-coagulation you are taking, but don't stop taking any medication until you speak to a doctor who is an expert.

Here is a paper you can show these doctors (are they rheumatologists?)

APS: What Rheumatologists Should Know about Hughes Syndrome

February 17, 2016 • By Graham R.V. Hughes, MD, FRCP

the-rheumatologist.org/arti...

With good wishes,

Ros

2 likes
Reply

Thank you. I have read sticky blood and found it really informative. I will look at seeing an immulogist as soon i can. I live in an remote town in Western Australia so the drs are so far behind on hughes.

I feel a bit more intune now so thank you.

Im currently on asprin.

Much love

Karen

Reply

I guess you are a very long way from Melbourne as Dr Tim Godfrey is a recommended specialist there and a colleague of Professor Hughes' Test results can come and go, it is true you don't lose the disease just because you go through a brief phase of negative testing. MaryF

Reply

Hi Karenmaree144,

You have got a very good answer and I totally agree with what Ros says.

I also think you should look for a Specialist of autoimmun illnesses who has had patients like you before and knows how to treat you.

Are you put on some anticoagulation yet?

I wonder if you have read "Sticky Blood Explained" by Kay Thackray? She has APS herself and writes about a lot of neurological symptoms. Also a good book for relatives to understand how it is to live with this tricky illness. I have bought it in pocket here in Stockholm.

Best wishes from Kerstin in Stockholm

Reply

I had a series of DVTs in the 80s. My high platelet count made the cause a seeming no-brainer and I was put on warfarin. DVTS stopped. Some years later my platelet count returned to normal and I was taken off warfarin. And that week, THAT WEEK! I had my first migraine. Personally I thought there must be a connection betweeen the migrane and stopping warfarin, but local docs told me that was batty.

The migranes continued and I tried my best to carry on no matter how severe or scary they were. Some years later my daughter noted my symptoms during one attack and concluded I was having a stroke. Off to the hospital and to docs. MRIS revealed I had actually had had dozens of mini strokes.

Tested positive for cardiolipin antibody and back on warfarin. Migraines/mini strokes stopped.

FAst forward 15 years: blood tests are now negative and due to incompetant clerks not bothering to copy paperwork onto new digital platformm, those positive bloodwork results are lost. Prior to my successful hip replacement, the Duke hematologist (and I chose to have the surgery at Duke due to the APS expreienced hematologist there) concluded I did not have, and never had APLS. After all — the current blood work was negative and I had no record of any positive blood work — just my memory. He indulged me by supervising the bridging from and then back to warfarin, but he urged me to stop warfarin later as he is convinced I do not have APS.

My result was to say “No. No. Nooooooo. After what happened to me the last time I stopped warfarin I would send for the seeds and grow curarie in my basement and make my own warfarin. I don’t think I’d do a good job at concocting a stable formulation, but that would be better then going off warfarin.”

After making it back home I reconsidered: after all I went down to Duke to consult with this famous hematologist, and now I’m going to say that I, the English major, know more about this than he does? I went off to Cinncinnati to see the hematologist who first diagnosed me. He also no longer had my blood numbers, but he did have his notes and he remains convinced that though my numbers may be negative, that the dangers from going off warfarin far exceed the supposed dangers of staying on warfrin.

So — you’re not alone. Sorry for the long post. But again — you are not alone. Dr. Hughes has said “The patients do not fail the test. The test fails the patient.”

3 likes
Reply

Omg you have been through the mill too. Thank you for sharing. I need to get my dr to under stand more of hughes.

1 like
Reply

You should be on something "stronger" than Aspirin with a small stroke and Lupus Anticoagulant. Lupus Anticoagulant is an antibody they test for a diagnose of APS and not the illness Lupus (another autoimmun illness very like APS which it often goes hand in hand with). APS is also very like MS so therefor it is important to have a Specialist who knows what to look for and how to treat you.

Ask for a trial of LMW Heparin. It is an anticoagulation drug like Warfarin and works in another way than Aspirin which is an antiplatelet drug.

Kerstin

1 like
Reply

Thank you, i live on the other side of Australia to Melbourne, i will endevour try to again to go back to my doctor to explain all this

Reply

I have read "Sticky blood " its very informative

Reply

You may also like...