Has anyone in the USA been treated for Hughes with a Seronegative blood

I tested positive about 14 yrs ago, now my blood test are normal. I just saw the hematologist in kaiser northern California USA. I had a pulmonary embolisms with my 1st pregnancy, had 3 miscarriages all past 12 weeks, tested positive. For anticardiolipin. I have headaches daily, MS like symptoms, and rash that looks like grapes on my legs. She said because I have had no recent blood clots & my recent blood test are negative I was missed diagnosised years ago. All my history idoesn't matter. I am so confused. Do I just forget being diagnosised with this 17yrs ago & figure it has gone away? Should I ignore my symptoms. I am ready to get on a plane & go to Dr. Hughes. I just am so tired of everything. I just want to give up. Designer16

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  • Don't give up. I struggled for 30 years trying to find out what was wrong with me. Even though I have a diagnosis, I am still struggling with different symptoms and doctors who don't know what they are talking about. I have a friend who is seronegative and has been diagnosed with APS based on her symptoms. She had her first P.E. at 19, MS symptoms - still possibly MS, had pre-eclampsia when pregnant and almost died, has had 2 more blood clots, but still tests negative. She is being treated with warfarin and other medications as she has many autoimmune disorders. Please find a hematologist and a rheumatologist who are familiar with APS. I recommend the APS Foundation of America (http://www.apsfa.org/links.htm). You may be able to find a doctor in your area. My hematologist told me that if you were diagnosed w/APS once, it means you have APS even if you are tested at a later time and it shows up negative. Check these websites for doctors:

    medicinenet.com/antiphospho...

    medicinenet.com/antiphospho...

    Good luck.

  • Hi there, this site is USA is a good source of contact and info.

    americanaps.org/ - this is the only one I know of. You will not be the only one in USA with the problem, which some of us also have in the UK, myself included. I am sure other USA members will steer you in the right medical direction to more sensible care... and yes some do fly over to see Professor Hughes.. but it is a long flight! Mary F x

  • Have not heard of the site suggested above but we always direct people in the USA to look here:

    americanaps.org/

    DO NOT GIVE UP!!! You must go and see a APS specialist who knows their stuff. I was in the same boat as you and eventually had a stroke. I then took myself to see Prof Hughes. My understanding is that once a dx always a dx even though antibodies come and go.

    If you go onto the Hughes Syndrome website there is a transcript of last years patient day that you can purchase (or go to utube and watch) when they talk about seronegative Hughes. Prof says he has a set of identical twins, one is seropositive the other negative but they have identical symptoms - go figure!!

  • Do not give up! I am so sorry you are.feeling this way and have to put up with thissort of thing. I am very similar to you, i've had 2 clots and tested positive (more than once) back in '98 and now routinely test negative. If you read some of my other posts you will see that i am also very frustrated by the lack of understanding of some health professionals. I have seen Professor Hughes and he is 100% supportive saying that the diagnosis absolutely stands.

    Please, please do not give up and if you can get over to see the Professor then even better. This site has been a god-send and the support of members so reassuring. I hope you can get some answers over in the States.

    Best wishes :)

  • I agree with Willa. The MDs I know on the APSFA website are good. Please get another doctor! If you can go see Prof Hughes--do! I did, but you will still need a local doctor. I have Kaiser in Colorado but was able to get a referrral to see a Prof of Hematology at Univ of Colorado (who knows much more about APS than Kaiser doctors) based on my positive blood tests and my brother's history of a large stroke. I have never had a thrombosis but have several symptoms including severe headaches that resolved on lovenox and plavix. Your rash sounds like livedo, your past history is c/w APS and your current symptoms sound like APS and will hopefully improve with proper treatment. APS doesn't go away. For now, until. Ou find a better doctor, you can take ASA 325 daily if you aren't already.. I would send an email to your PCP outlining your history, current sxs, concerns, etc and request they enter an urgent referral to one of the Non Kaiser MDs who specializes in APS. Good luck!

  • For the non-initiated amongst us Salty Im assuming that ASA 325 stands for Aspirin 325 mg???? Here in the UK Prof Hughes usually suggests baby aspirin which is 85mg daily on a full stomach. However we dont advise anyone to do this without first speaking to their GP especially if they are already on other medications but if you were considering coming over here to see Prof Hughes or one of his colleagues for instance then taking it until you arrived to see him and for the flight etc would be a good idea.

  • You definitely need a new doctor! I've only tested positive one time and that was 7 years ago but I have Tia symptoms when my INR gets too low and I have kidney damage due to clotting. I've been tested at least 4 more times and despite the fact that all the other tests have been negative, every md I've seen agrees it's APS just based on my clotting hx and symptoms. I've never seen anyone in California. I've been to Mayo in Jacksonville and Columbia Presbyterian in NYC along with seeing doctors in my hometown. Find a good md to treat you!

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