Can you test positive for APS one year and test negative another year?

[armywyfRN]

[Manofmendip]

Yes, this is possible as far as I understand. Some people move in and out of testing positive but my understanding is that once you have two positive tests within the accepted time frame then that is a diagnosis; if you are subsequently tested negative it does not mean that you are cured.

Dave

[armywyfRN]

Thank you so much for responding and giving me insight! This disease is so confusing! I was diagnosed 7 years ago but I saw a new neurologist and he said I didn't have APS. I was treated with heparin during my pregnancies after the initial diagnosis.

[MaryF Administrator]

I remain significantly sero negative despite an obvious clinical history, but also was sero negative for obvious Lupus symptoms, but now have recently tested positive. The clinical history with this disease is so very important. MaryF

[loublou]

Me too. Stubbornly negative across the board. But clinical presentation absolutely textbook

[Hidden]

Yes me too. Two positive results on top of clinical history, now test negative but with symptoms.

[Bonnie39]

I agree with the above. I have tested positive for APS and SLE and have at least 8 of the symptoms. And yet still one dr has discharged me from St Thomas. I suspect drs are reluctant to get us treated and care for us due to the cuts to NHS budgets. This dr even told me I should come off the lifelong warfarin the thrombotologist has put me on. The thrombotologist increased my INR target yesterday and from looking att symptoms as CT scan plus cystoscopy I had last week confirmed I am struggling with lupus nephritis! She has written to my gp to get me referred to a rheumatologist and nephrologist. I am seeing the neurologist who recognised my stroke and TIAs as Aps on 20th.

[donnabrain]

I was positive, then negative , Professor D, Cruz has twice re-instated my diagnosis, any time I see any one else at the lupus unit, they always say I don,t have it.

I always ask to see him and no-one else now

[GinaD]

I was strongly positive back in the winter of 2000 - 2001 when I was first diagnosed. Here in the States docs are converting from paper to digital records -- and my positive blood work has been thrown out! So my most recent specialists do not have access to those positive results. And since I seem to be doing just fine and my blood tests are currently negative, they advise me to discontinue the warfarin. They answer my objections by pointingg out that CAPS is very "rare" and that it dose not occur in patients who only had arterial clots. I had arterial, TIA events in 2000, but twenty years previous I had several DVTs.

I went on warfarin for those DVTS in the 1980s which were attributed to a sky high platelet count -- 800+. When the platelet count dropped, I went off warfarin and the migraines began and I started down that road of accelerating symptoms until the 2000 mini stroke crescendo.

So I've already tried the discontinue-warfarin-as-an-experiment thing and it resulted in years of migraines, "funny turns," TIAs and mini-strokes (there was a lot of damage on the MRIs -- which have also been thrown out). And I'm not going to try that experiment again! Until they can offer a rational explanation (i.e., not "conversion disorder") as to why all the symptoms coincidentally went away on warfarin I am going to stick with my meds -- even if I have to set up a green house in my basement and grow the plant whence curare comes from myself!

It might be "killer coumadin" for many, but for me -- it saved my life!

[kimmac42 in reply to GinaD]

Hi,i was on warfarin back in 2012, was having TIAs etc. Was told previously it was conversion disorder,couple of months on warfarin i was so much better. Doc tried to say it was placebo effect????

[Lure2 in reply to kimmac42]

Hi kimmac 42.

How did it go? Are you on warfarin?. It can take up to at least 2 months to work.

Best wishes from Kerstin

[Lure2 in reply to GinaD]

Hi Gina,

Fingers crossed for you that you have the strength to continue what you know is the right way and what you believe in!

Kerstin.

[armywyfRN]

Oh my land! This is all so bizarre to me how docs who are unfamiliar with the disease are so abrupt to minimize our signs and symptoms down to "conversion disorder". I can respect a doc for saying "you know, I am unfamiliar with APS but lets find you some help". I was diagnosed by my fertility specialist but now I have had a crazy flare of symptoms including a TIA. The new neurologist initially said I was negative but then recanted and said he didn't have all of my results, when I questioned the negative reading. Had he told me that's not uncommon I would have had a little more trust in him. I am on a self prescribed ASA regimen now, because post TIA I received no new orders because I was told I had a "conversion disorder" because I'm a stay at home mom with 4 children.

Personally I feel as though I haven't had a major flare until now due to my diet, exercise and homeopathic remedies. My flare up came post viral infection, which i rarely encounter. I had chorea and aphasia that the ER doc attributed to the meds I was taking, and he may have a valid point. I am losing trust in my medical team. I am taking it upon myself to educate myself and hopefully my doctors that it is not uncommon to have positive and negative results but exhibit clinical manifestations of Hughes syndrome.

Sorry so long...thank you all for reading and responding.

[Lure2 in reply to armywyfRN]

Hi armywyfRN,

Sounds good that you take upon you to educate your doctors! Sorry you have to deal with things like "conversion disorder". Many APS-sufferers have experienced this. Me also like it in the beginning of my illlness here in Sweden.

Take good care Kerstin

[happee1]

i can test positive today and be negative tomorrow...it seems to come and go with me..when i am positive i have all my usual symptons

[Hidden]

whatever number my Rheumatologist is testing for goes below "10".(considered "normal"-ie my blood is not "sticky") and sometimes it moves upward...say "18, 20," and then back down....she insists on testing me every 90 days...to make sure I do not need more than 320mg Aspirin and Plaquenil/daily to ..keep my blood "flowing" as it should..

[Lure2]

So you mean that when you have low antibodies you have no symtoms!? Not the INR? But what about those who have no antibodies and are real sick. Does that make sense?

I have always had very high antibodies of IgG, IgM, Beta2Glycoprotein and Lupus Anticoagulant. I feel almost the same all the time. I can notice the weather changes. They make me feel worse.

And I do not think the antibodies have anyting to do with more or less "sticky" . That has to do with the INR. I doubt I have more inflammation than others even if I have skyhigh antibodies. They say you are at a higher risk for thromboses though. Interested to hear some answers.

Kerstin in Stockholm

[Rhian21]

Hi, I have recently seen yet another Rheumatoid specialist who concluded that as my tests had been negative last time they checked,(3 years ago!!!!) that I must be clear of it now even though I have had a diagnosis in London hospital. Dr in St Thomas discharged me also, so I'm just floating around with this situation alone, feeling so very unwell some days, and fine the next. However, I can almost tell when my APS is kicking in just by the way I feel and I wish someone would be able to test me on those days but unfortunately I'm too unwell at these times to get myself to a surgery or hospital to be tested. I'm most definitely just living on the sideline so to say with APS. I feel my life is compromised. I have also given up on medical support, you can only ask for so long and I feel that I have only had medical support for about one year out of the 40 others that I have been suffering alone. I guess it's a case of se la vie from here, I feel like a floating time bomb on some days, I guess we are all just numbers to the medics. There are professionals who are banking it in as a result of us, I however feel very poor with my health and of no worth within the scheme of healthcare. I cannot afford the cost of private care but am grateful at least for those of you who can afford this option as you share your insights with the rest of us on forums like this and help our awareness as a conclusion, which is good.

[Lure2 in reply to Rhian21]

Hi Rhian21,

I am so sorry to hear that you have difficulties! Are you on any medication that can help you feel somewhat better?. It can sometimes be a mixture of fibro, Lupus and APS and other connective disesases. Perhaps that makes it worse. Hope you can have some help what to do. I can only give you my best thoughts from here in Stockholm .I think I understand you.

Kerstin

[armywyfRN]

I wish everyone luck with getting great medical care. I believe that APS affects everyone in a different way and that's what makes it hard for doctors to differentiate between the disease and "conversion disorder". I was quite irate, when I was very sick in the hospital post TIA and the neuro doc said it was conversion disorder. I knew what I had been dealing with for several days. That's when I decided to research the possible causes of my TIA. I'm so glad I did, because now I can link the symptoms that I had before the TIA to APS. I was treated for migraines, had sleep studies, arthritis at a young age without injury, visual disturbances...not to mention the miscarriages (which brought the initial diagnosis).

[rainyNW]

Hi, Yes you can! You need two positive tests over a 6 month period of time with symptoms. Mine are all over the map, sometimes positive sometimes not. The disease is fickle!

Stay well! Lisa