I was wondering if anyone would be able to share their stories of how they were diagnosed with sero-negative APS? I just wanted to know if anyone has had similar symptoms and the same tests. I'm getting ready for my 1st appointment at St Thomas and wanted to know what to expect considering i have negative bloods.
Thanks
MJ x
My case - I had all my children at St Thomas', was treated for multiple clots 24 years ago... and then had two more pregnancies managed on framin, nobody ever mentioned APS to me, and 6 weeks after I always came off the medication.
I went away from the area 13 years ago, none the wiser, having thought it was a pregnancy thing...but continued to have dreadful health problems... which have all come up now, including Lupus and Sjogrens... AND once got suspicious did research and put two and two together for my entire famly, past and present on one side .. and being in an area where dinosaurs still roam nightly..and referrals are like hens teeth.
. I went to see Professor Hughes himself at London Bridge, which St Thomas' referred to as 'labelled APS'..... however my daughter only 15 has passed tests for both APS and SLE Lupus, and a question mark hangs over my son, very young who has to have aspirin... currently the dinosaurs have been herded into a more manageable enclosure locally. Seronegative patients with clinical incidents are supposed to be treated the same. This was clearlly mentioned at the last Patients Day at St Thomas!
You can read info on APsnotFAB , who tells a good seronagative tale. Best of luck with your appointment, and don't forget to be armed with chronological detail of everything, in bullet points. Let us know how it goes. Mary F x
Despite my previous history and two prior positive tests, I have had three visits to St T since August and have tested negative with a clear MRI scan. I have not felt overly supported and have an appointment with Pro Hughes next week (privately) as i feel as though i am going mad! I have just started taking a daily single dose of baby aspirin but have had an awful week with dreadful fatigue and bad headaches. I even slipped in the shower last week and smacked my arm (ggrrrr!). My memory is shocking at the moment and i have given up all hope of promotional work interviews because i fear making a right mess of the interview process.
Good luck with St T, i am sure you will have a positive experience. x
In my case I went to St Thomas in 2004, it was chaotic back then. I saw a junior who thought I had nothing, it took 6 months to get an appt to get blood results back then. Another junior said they were OK but he told Dr Hughes I had livido but not me. I spotted Dr Hughes in a corridor and ambushed him I guess asking if he would chat a minute. He agreed. He said all my symptoms told him I had APS and gave me as aspirin, then plavix. The wait for follow up appt was a year. I passed a letter to him through a friend who saw him privately and he wrote to my GP that I start fragmin then warfarin. I have not been retested since and hate my seronegative label and have only told my hubby recently nobody else knows. I am going to see DR Hughes on Tuesday and pray I will finally get a positive result . Good luck at Tommys I believe it is better now.
They are currently being great with my family. Mary F x
negative aps long term treatment
Tested positive and then negative for APS
Is it possible to have APS or Lupus with negative blood tests?
