Negative result on second blood test does this mean I don't have APS

[Mojo55]

Got my blood result from heamatologist,my second test was negative does this mean i don't have aps.

[MaryF Administrator]

If you have all the symptoms and have had incidents, it is likely that you have Seronegative Hughes Syndrome/APS. Please look at the section on the actual charity website or under our pinned posts on here. MaryF

[Mojo55 in reply to MaryF]

Thanks Mary , I will look at the website and the posts .

Thanks again.

[Manofmendip]

I agree with my colleague Mary.

Dave

[Mojo55 in reply to Manofmendip]

Thanks dave.

[Lure2]

I also agree with the others. I hope you have an APS-Specialist that understands what you tell him/her? That is very important.

Best wishes from Kerstin in Stockholm

[GinaD]

Its confusing. On the one hand, due to the elaborate and secret workings of the immune system, many people can score a positive on APS blood work without acually having APS. THis is why a classic APS diagnosis requires positives separated by some weeks or months.

On the other hand, as Dr. Hughes has said, "Its not that the patients are faliling the tests, its that the tests are failing the patients." Many of us do have seronegative Hughes. And that is one reason it is vital to consult with an experienced APS doctor.

( medicine moves forward. But for those of us who lie in the undiscoverd country, it can be frustrating. My Father, who passed in 1990, was labeled a "coward" during World War 2 because he got frequent blood clots in his legs (veins would bulge and bleed, filling his boots with blood,) would nearly pass out (and did a time or 2) from exhaustion. The Army did finally, reconize his math abilities and sent him to OCS whence he worked in the Signel Corps. He did got to med school on the GI bill and became a doctor, but that 'coward" moniker followed him. "If the doctors couldn't find anything wrong with him, then he must have been making it up? Right?"

[Mojo55]

Hi ihavent posted for a while but the answer to your question is yes I was positive on the first test I had the second test at haematologist clinic, I haven't had any major blood clots but did have fertility problems and miscarriage and a pregnancy where my baby stopped growing and feeding she had to be delivered by c section at 7 months, I continue to have symtoms of pain in my ribs i have servere divacular disease,gerd ibs arthritis, wear and tear on my lower and middle back,neck and shoulder pain,muscle spasms in arms tingling in my left hand and fingers and on left side of face and across top of my head these tingling episodes could these be Tia's I appreciate if any one has any of these symtoms and has been diagnosed with Hughes syndrome

[Lure2 in reply to Mojo55]

You wrote this post 3 months ago. Have you found an APS-doctor yet, as this as well as the diagnose, is the most important thing for us with APS.

I should say it could very well be TIAs you have, especially as it is on one side of the body. An APS-doctor can handle this.

I had a lot of TIAs or microclots before I started warfarin. One time I was numb on my right side of the face, the right side of the tongue (!) and my right arm. Then I went to hospital and had to stay the night there. I got home with Aspirin and later they found my high levels of all 3 antibodies pointing to APS.

So many members are positive once and negative the other time. It is the symptoms of APS (only an experienced Doctor knowing APS can diagnose you) that counts!

Read "Sticky Blood Explained" by Kay Thackray.

Do not wait. Take care.

Kerstin in Stockholm

[Mojo55 in reply to Lure2]

Thanks for your reply Kirsten, I haven't found aps-doctor as I thought getting a negative test meant that I don't have aps it's so confusing I have a sister who has had lupus ten years now my niece has sticky blood my sister was the one who encouraged me to ask my gp for another referral to be checked for lupus and I was checked for aps too that's when I got the first positive for aps but negative for lupus,I have fibromyalgia too I was diagnosed about 8years ago at ruematology,but I don't know were to go from here.

[Lure2 in reply to Mojo55]

I do not know where you are situated. If you live in England please look at hughes-syndrome.org/special... in your area.

If in other countries look at apsaction.org

You probably have got APS and fibromyalgia often gets wrong diagnosed and can also be APS. That is why it is so very important to talk to an APS-Specialist as so very few doctors know this illness.

Stay on this site as you can find good help here from other members.

I wish you good luck to find a nice and good APS-doctor!

Kerstin in Stockholm