APS or Not

[dannigirl39]

I was diagnosed with APS by my neurologist.. my anticardiolipin was 22 and then 20. I saw a Rheumatologist who repeated the test and it was 18... he told me that I did not have this because it had to be 40 or above.. now what do you do when you have 2 doctors telling you opposite things. I have unexplained symptoms. .vertigo, headaches, fatigue, bladder issues and felt like APS may have finally been the answer and now I'm back to square one.. and yes I have been worked up for all kinds of things and all negative..

[Puska]

I think it is likely you dont have APS and everywhere I have read the levels need to be above 40, twice. You also need to have had a thrombotic event or pregnancy loss before being diagnosed with APS - without that the test just means that there are some antibodies and 'healthy' people also have them. That is then called APL.

[london-lass in reply to Puska]

I am not sure about levels in blood, but I know you can have APS without having a thrombotic event.

[Puska in reply to london-lass]

I thought you needed a DVT /stroke or miscarriage history ie a clinical event and a blood event. Healthy people can have the antibodies but no further issue, just like several other auto immune antibodies. Has to have a symptom.

[Puska in reply to Puska]

Diagnosis of antiphospholipid syndrome. Antiphospholipid syndrome (APS) is characterized by venous or arterial thrombosis and/or an adverse pregnancy outcome in the presence of persistent laboratory evidence of antiphospholipid antibodies (aPL).Aug 4, 2016

[JDMiller in reply to london-lass]

I agree, you don't need to have a thrombotic event.

[Fra22-57 in reply to Puska]

Never had any clots or miscarriages etc and mine diagnosed in small brain. my INR 3-4

[MaryF Administrator in reply to Puska]

It is possible to have this disease and test negative, I did for years, and in one of his best examples Professor Hughes himself speaks of a pair of identical twins, they both have identical symptoms, both have Hughes Syndrome/APS but always tests positive, and the other negative, or rather sero negative. MaryF

[dannigirl39 in reply to MaryF]

I have severe neurological issues.. dizziness and headaches every day. I have read that being on the right anticoagulant can help alleviate symptoms. I'm only on a baby aspirin. Does anyone else suffer from daily severe headaches with dizziness. I'm also getting muscle spasms in my face. The rheumatologist said if all else fails he may start me on plavix. I'm just desperate for answers

[MaryF Administrator in reply to dannigirl39]

It is not unusual to be given a Fragmin trial for a few weeks, Plavix is another anti platelet like Aspirin, I would suggest a Fragmin trial, to see if the symptoms go away. hughes-syndrome.org/resourc...

MaryF

[JDMiller in reply to dannigirl39]

My dr put me on eliquis for cognitive and migraine issues related to APS. It has helped. Plavix did nothing to improves these symptoms (tried it first). That said everybody is unique and will respond to meds differently.

Dizziness could be Dysautonomia (POTS)... do you get dizzy when you stand up and heart will race. Or during a shower? Dizziness could also be a side effect from another vit or med.

Good luck!

[Budleigh in reply to dannigirl39]

I two have very bad headache was

Which Last for days and my spasm attaks are very bad all over my body . So I set up my iPad Last night to video me .so that I can show the medical team tomorrow as I have been in hospital now for 19 days because I had bad swelling in my right leg And getting short of breath due to having blood clots on my lungs. I have lost all movement in my bladder also . Things are happening every few days . Then can't even control my i n r . I am taking 35tablets everyday and two 7.5 fondaparinux injections. There never seems to be a end . Professor Beverly Hunt did inform me that it would be a rollercoaster she was not wrong . But I will let you know what the doctor's say once I show them my video . Hope all goes well for you.

[Hughes-Comrade]

I believe you can have aps and still register zero. Others will ring in.

[wales]

I have sero negative APS I have never had a clot or a miscarriage but I have all the other symptoms I have livedo and have had five metatarsal fractures. I am on warfarin and if my inr drops the symptoms return .if I was you I'd get a referral to prof graham Hughes at the London Bridge hospital

[Puska]

I guess there is a difference between diagnosis based on the protocols for research purposes versus symptom based. Which makes sense in a patient treatment setting. And maybe it is different in Australia as you won't be tested for AP antibodies unless you have had a DVT or stroke.

[Tammylola2012]

I tested positive for APS in 2011 after a major PE. Was treated on thinner therapy for 1 year. Tested after therapy and found seronegative for years. DVT/PE again in 2015. Positive again, autoimmune antibodies are predisposed with "trigger" events. It is possible to test seronegative but still have diagnosis for APS without clot events.

[SueLovett]

I don't know where the notion of having to be over 40 comes from, as I remember Prof. Hughes saying his youngest ever patient was 2 years old. Prof. K thinks I have had it since 15 & possibly younger. Perhaps you should try and find a more knowledgeable consultant fro th foundation website.

[Puska in reply to SueLovett]

Not 40 as in age but level in the blood.

[dannigirl39 in reply to Puska]

The anticardiolipin igm level... mine was 20 then 22 and then 18.. but the rheumatologist said they don't diagnosis you until it's 40 and above.. he said he was very familiar with professor Graham and that all of the specialist in the US use 40 as a standard of care.. he was reluctant to giverify me a diagnosis even though I have very symptom.. so frustrating

[Puska in reply to dannigirl39]

The benchmark of 40 seems random. But then I never understand any autoimmune benchmarks. Eg Antidnsdna. If you have the symptoms and at least a measure of the antibodies in your blood then surely that is a match and therefore diagnosis. And in Australia they seem to be sticklers for meeting the benchmark. How can 39 be 'normal' but '40' not be, when there are symptoms.

[JDMiller]

I also know that APS specialists will have the latest guidelines as to the antibody limits to look for. A non- APS specialist will likely be using a lab standard for normal which range is much lower/smaller. Also there are different tiers of "positive" that seem to be treated differently For instance a low-tier, non event might just be given baby aspirin. There is also a "clinical dx'd" that can occur from an APS specialist that will use their medical training to dx, not just blood work.

So you see, seeing an APS specialist is very important. As I've recently commented, APS is not the flu, it's a serious illness. Error on the side of caution and get second/third opinions.

[Lure2]

Hi there,

I wonder if you were feeling better with your symptoms when you started Baby-Aspirin?

Aspirin in a low dose (75 - 100 mg) is what you start with to see if your symtoms disappear. For me it did for some time. Later i was worse and had to start Warfarin and now it is ok.

If the symtoms are better it could absolutely mean you have got APS. Like Mary says it is not unusual to try a real anticoagulant like Fragmin to see if the symptoms approve. I do not know how it is to stop anticoagulation if you do have APS and you are sero-negative.

Are you better after Aspirin?

Best wishes from Kerstin in Stockholm

[AnnNY]

The problem is, is that there are APS specialists in the US who I have seen and are prominent who will not treat you with anticoagulants for the MS like version of the disease without a stroke, dvt of multiple miscarriages. Nor do they check for the secondary autoantibodies for APS. Dr. Hughes writes often that people who have the other symptoms of APS should receive a trial with heperin to see if they improve, so that and their history determines whether or not they have APS. I, for instance already knew I got better from severe neurological symptoms, from both aspirin and heperin, so it was very frustrating to be at a center that they just did not accept Dr. Hughes' research and recommendations. I was lucky to have found an associate of Dr. Hughes who has treated me with anticoagulation with good results. I live in fear of running into a doctor who insists that I shouldn't be on anticoagulants. Though, since my breathing has improved so much, it is difficult to believe a doctor would stop the anticoagulants. (My APS specialists says it was likely microclots in my lungs that were causing the shortness of breath.)

So understand there are two schools of thought on this. From my own experience, I believe Dr. Hughes is correct. Eventually, I believe that more and more doctors will come to believe that as well.

[Puska in reply to AnnNY]

Agree with you here. And Drs here will not call APs until you meet the clinical criteria. Because there is less professional risk in them doing that.

[Marbles99]

Dannigirl39 - I feel for you , I really do. I have documented my story elsewhere on here. So I won't repeat it. But basically my GP and my neuro 'assumed' I probably had APS. I had all the tests for things that were happening to me and there was no explanation. Weird things things like odd kidney and liver tests results - scans showed nothing sinister. Blood in my urine - more scans, cytology etc - nothing sinister. Then the 'usual' APS symptoms (I could tick the list pretty much), eye sight problems, a clot (at the back of my eye). A chat about my family history lead to the neuro asking for some blood test for APS etc I was just told my first test was elevated and so a possibility of APS. Then my second test was elevated, and along with the clot in my eye - well, you would think APS. I then went into weeks of not being able to do anything - my neuro went on holiday and then took some paternity leave, which is fair enough, I am not complaining about that. Just left me in a position knowing the results were elevated, thinking it was APS. I even read both sticky blood books cover to cover! In the meantime my neuro was continuing investigations even though he was away. He was getting some advice on my results from an APS specialist, on the list.

This is where our stories converge and why I really feel for you.

I saw my neuro on Friday for a long chat. The APS specialist has told him I do not have APS, my antigens do not meet the 'official clinical guidelines set out by NICE' that would indicate APS. So although my antigens are elevated and hence I am at risk of clots as shown in my recent history, I do not 'qualify' as an APS patient. And so won't be medicated as an APS patient would be. And now I am back to square one. I have gone a year not knowing what is causing my problems, and I thought finally I had the answer. Not so. And now I don't know anymore. I am back into more tests, more scans etc and possible visits to a neuro opthlamic specialist. Possible surgery even. I am now classed as having 'benign intercranial hyperthension'. In other words, they don't have an answer.

So I really, really know just how you feel right now, honestly I do. Just when you think the answer is there, someone takes that away. It is not a nice feeling.

[AnnNY in reply to Marbles99]

I'm wondering if you might be able to go to a 2nd APS specialists, since some follow Dr. Hughes, and others are following these other stricter guideline, especially since you have had a clot. That's what I did, but I'm in the US. Also, Plavix works like aspirin, but I believe is a somewhat stronger. I'd been taking aspirin for years and just living with a bit of stomach discomfort, because I'd rather that than the symptoms it relieved. However, when I was put on Plavix alone my stomach discomfort was gone the next day. Perhaps your neurologist would put you on that and you can see how you do.

[dannigirl39]

I went from being perfectly fine..in the gym.. to debilitating headaches, vertigo, fullness in my ears and bladder frequency.. I spend every day in bed.. I feel hopeless..nothing is working.. I'm on a baby asa, verepamil for migrane prevention and just tried diamox for headaches.. I feel worse now than ever.. I don't know what to do now...

[Marbles99 in reply to dannigirl39]

I don't know what to say........ just I know where you are coming from. I used to be very active. Looking after my Mum's garden for her; loved walking the outdoors; playing footie; Now....... I just do a bit of digging and I am knackered. Walking is no longer enjoyable though I yearn the outdoors.

Work has been very hard, but I live on my own so have to pay the bills, literally drag myself out of bed some mornings. And then have problems all day at work, though try to hide it. Because people don't understand because you 'look okay'.

Please, please, please don't feel hopeless, you are not, it is just this 'thing' APS or not ----- try to stay positive. It is easy to say and I do know just how you feel. But that has been my only saving. I have just thought (even before they thought it was APS) that whatever this damn thing was it was not going to beat me. Try to get up and do something you enjoy, anything. Cinema, walk the dog, read a book, cook your favourite meal (my 'diet' has gone out the window because of my comfort foods....), listen to your favourite music, whatever, just anything. One thing I have found is that if, just for a short while, you can kind of create a little normality in your life, it makes you feel better, if just for a short while. Please try.

[Aktop]

Everyone please read Medical Medium by Anthony's Williams, this is eye opening medical info that explains the root causes behind mystery illness, symptoms. I myself am diagnosed with APS but am now doubting it's the root cause. I had Shingles one month before clots, along with a frozen shoulder, part of shingles, colitis, anemia, fast heart rate and headache in months before superficial clots,. After reading book and elimating foods that feed viruses like Shingles, Epstein Barr, Strep and others I have gotten rid of all symptoms. I want to get retested because I was tested when my body was full of inflammation and platelets high. Now all normal. This book everyone should read.😀🍎🍒🍊🍓🍐🍉🍌🍈🍆🍋

[Phoenix54 in reply to Aktop]

It is interesting that you also had Shingles one month before a clot!!! It was the same for me! I read somewhere that Shingles are known to trigger APS. I intend to read the book you suggest! Thanks!

[Tammylola2012 in reply to Phoenix54]

I also had shingles about 1 year before my major DVT/PE occurrence. I had them in July 2010 and clotting and APS diagnosis in November 2011. Definitely interesting to see this thread in others also, just like me.

[OMgirl]

Hello, guys! I m 29 years old. In 2010 doctors sent me to MRI because my period lates for a 2 years. Diagnosed with hyperprolactinemia. Accidentally,they took MRI of whole brain not only of pituitary. They found out that I have lesions on my brain. Diagnosed with MS in 2011 without any symptoms. Lately, in 2014 my health getting worst slowly. Fatigue, legs muscles weeknes,balance problems,walking problems...In 2015 I had misscariage. After that I was diagnosed with thrombophilia. In jun 2016 I got pregnant (planned pregnancy). In july 2016 had massive PE and 2nd misscariage. I am taking sintrom. Did anticardiolipin and lupus test. Lupus anticoagulant is 44,5. Doctor told me to do again anticardiolipin antibodies for 6 weeks. Before I had everyday headache and my period could be regular ony with dostinex pills. Now no headache and my period is regular. Someone have something similar to me?

[Lure2 in reply to OMgirl]

I suggest you put your own question on our site if you have got APS.

Your question will be seen and you may get several good answers that way also.

Best wishes from Kerstin in Stockholm

[OMgirl in reply to Lure2]

Thank you, Lure2, for your answer. I will do that.

Best wishes..

[Puska]

Yes. I agree that the criteria is based on admitting someone into a research trial. My GP said that Xarelto was a 'dangerous' medication and a balance of risks versus benefits even with someone having had a clot. In Australia it is subsidised by the Government and can only be prescribed for patients with AF or known DVT. Aspirin is of course less risky. I wonder if plaquenil may become the new Gold standard for 'prevention'.

I get the feeling in Australia that a Dr would not give prescribed anticoag treatment to someone who did not meet the clinical criteria due to Govt control and subsidy of prescriptions. My niece might be a test case - she has many APs symptoms, does havs Lupus, but is seronegative for APs. Same specialist as I see in December.

APs sure is a weird world.

[Puska]

Its an interesting debate. First do no harm could possibly also apply to a patient who had a bleeding event on X or other anti coag if they didnt have a previous clot/event. From a legal perspective (and I imagine the same occurs in the US) is that prevention can be risky if there are no clear events. And anti coag medications are risky. The advice I got about continuing to take it was well before APs was diagnosed. My GP is a bit like a deer in headlights when I walk into his office but he will always do what the specialist (rheumy) says to do. And the rheumy is very much on the ball. She is almost impossible to get into as a new patient and she attends and presents at international lupus and APS conferences and has had multiple scientific papers published. I am in good hands.

[dannigirl39]

I am waiting for an appointment with another neurologist bUT my rheumatologist agreed to try me on plavix to see if it would help my headaches.. he said he didn't think the headaches were from APS but was willing to give it a try.. let's hope it works ...it's my last hope....

[AnnNY in reply to dannigirl39]

That's good news! I really hopes it helps.