APS TEST

[AdamHenkels]

Hello Everyone, I tested positive for APS in December after a Pulmonary Embolism. I took warfarin 3 Months. My doctor took me off it two weeks ago. They drew blood today for 2nd APS test. Still off warfarin? Should I be concerned about PE? Thanks Adam

[MaryF Administrator]

Your doctor needs to be guided by a specialist who fully understands Hughes Syndrome/APS, where are you located, our list of recommended specialists is here: hughes-syndrome.org/self-he...

If you do have any familiar pain in the mean time please do go go hospital.

MaryF

[AdamHenkels in reply to MaryF]

Thanks in Chicago

[MaryF Administrator in reply to AdamHenkels]

There are some names on this list: apsaction.org/

Also we have many members from the USA on here who may have more local knowledge. MaryF

[AdamHenkels in reply to MaryF]

Thanks again

[AdamHenkels in reply to MaryF]

Thanks again for everything. I contacted a specialist in New York and fax my blood results. He will recommend somebody in Chicago. Your a life saver.

[MaryF Administrator in reply to AdamHenkels]

Well thank you very much, we work hard as ADMINS on here to try and find solutions for all, even if it self empowerment through reading medical papers, but lovely to have that feedback, do continue to be a part of the forum, we are a pretty lively and caring bunch, let us know how it goes. Also do have a good look at our actual charity pages which contains excellent information and also recommended books to read written both by medical staff and patients. MaryF

[mylafont in reply to AdamHenkels]

You may want to ask him if he agrees with you having APS and not being on a blood thinner.

[Hidden]

There are APS specialists listed at the following sites:

APS Action

apsaction.org/

Stop the Clot

stoptheclot.org/learn_more/...

APS Awareness USA

apsawareness.com/

[MaryF Administrator in reply to Hidden]

I have only read in detail about the bottom three organizations, I hope you find some help. MaryF

[mylafont]

If you are positive foe APS, I think you should be on something to keep you from have a clot. In the least aspirin, if not blood thinners. I would question why your doc took you off warfarin and or get a second opinion.

My doc out me on an aspirin per day just when she suspected I had it. Once she confirmed it, then INR testing and warfarin began.

[Lure2]

If your second bloodtest shows positive antibodies again, you should no dobt about it, be put on warfarin as before and that as soon as ever possible. INSIST ON IT !!

See to it that you then talk to a doctor who understands this illness.

Best of luck from Kerstin in Sockholm