Hi
hope all as well as can be.
Does anybody know or have any experience of this? Please don’t say google it as I would rather hear direct from people.
Thanks
Hi Jaycie
Have no personal experience of it. Just know it’s connected to Hughes Syndrome.
Hope you get more replies.
Shazzie xx
I have a friend with APS and Lupus, she’s due to see professor Hughes privately in the new year. If your wanting to know something I can ask her for you. I know she’s on a forum but I would have to get you the link.
When I have something the matter, my GP always directs me to patient.co.uk as a trustworthy and sensible source of information (unlike the wilder and woollier areas of the web which I, like you, would rather avoid). So if you do want a reliable source of info on the web, you might like to try:
http://www.patient.co.uk/health/Antiphospholipid-Syndrome.htm
Alison
Thank you for your replies.
It is just that I had a letter from the hospital yesterday saying that “the anticardiolipin antibody test was again strongly positive”.
I don’t really know what this is all about except that a physician in stroke medicine has been sending me for repeat blood tests over the last few months since I was sent to see her as my GP wanted to check that I hadn’t had a stroke some time ago.
Thanks
Hi,
I have APS as well as MS. The anticardilophin antibody you refer to is one of the antibodies that interferes with the clotting mechanism in the blood making it too sticky.
APS stand for Antiphospholipid Syndrome and is also known as Hughe’s Syndrome in honour of the Dr who first identified it.
It is an auto-immune disease and basically makes your blood too sticky and therefore more likely to form clots. If you have had a past history of stroke or suspected stroke at a young age testing for APS is absolutely the right thing for your Drs to be doing.
Sadly though because your Antucardolphin antibody HAS come back strongly postitive a second time it does appear that you might have this condition. It is diagnosed based on your history plus two blood tests done about 3 months apart. If they are both positive you would be diagnosed with APS.
With a strong positive and a Hx of possible stroke I wouldn’t be surprised if your Dr puts you on anti-coagulants to reduce the risk of clotting again.
I was tested and then diagnosed after I had multiple bilateral pulmonary embolisms (blood clots in the lungs). My blood resutls have come back borderline high but I am on life long anticoagulants.
Most people with a high blood test result and a history of serious clotting (like strokes) are put on Warfarin. They are tablets that ‘thin’ your blood making clots unable to form. The dose you need depends on the INR results you get. An INR is the way the thinning is measured and for most people with APS you are looking to reach an INR of at least 3. The INR is tested by a blood test which is usually just a finger prick test like diabetes But because your INR can fluctuate depending on what you eat (and sometimes for no logical reason!) you are tested regulary, usually every 3rd day at first until it stabilises.
Some people think that APS is a walk in the park and all you need to do is take aspirin each day and you’re fine but I’m afraid that only applies to people with very mild APS. If you are prescribed Warfarin you need to make sure that you keep the amount of Vit K in your diet absolutley steady or it mucks up your INR. You will be given a list of foods high in Vit K and told how to manage it.
Sadly my INR was one that wouldn’t stabilise regardless of what I did and I am now on Clexane injections which are another form of blood thinners. I have to do two injections a day but they really aren’t very bad.
One really positive thing about being on blood thinners if you have APS is that many of the symptoms we attribute to MS ease or even resolve once we are decoagulated. MS and APS can be confused with each other as they can both cause neuro problems and APS can even cause lesions on the brain. Sometimes (rarely) people can be misdiagnosed as having MS when they actually have APS but there are differences clinically and it is possible to have both conditions.
I noticed a remarkable improvement in my overall stiffness when I started on anticoagulants and my mobility has improved. I wouldn’t go as far as saying it ‘cured’ my MS though! But a lot of symptoms that I had attributed to the MS were actually caused by the APS and have eased up heaps since being on the appropriate treatment.
There is also a really good web site for APS where you can get lots of questions answered too
And please feel free to PM me about anything. Horrid as it sounds I am actually pleased to find another APS person to talk to. It isn’t that common a disease and most people don’t know much about it.
Cheers,
Belinda
Hi Jaycie
A few years on - How are you doing?
I have
SLE Systemic Lupus Activiy found in my eye - and most of my organs
APS Antiphospholipid Found in my blood and Myelin Sheath
MS Multiple Sclerosis Found in My cerebral fluid and the Mylin Sheath
Yet I am 58 2 children 5 grandchildren - fit and able. Yes I do have blood clotting issues that are going to be addressed more so this coming week. Just incase I get major blood clots.
I had Lupus in the 1990’s. APS readings also at that time. But nothing serious.
Seemed to settle or more or less go for a good few years. Joint pains started in 2005 now gone I honestly believe Gellatine made that disappear. 1/2 tsp per day (as recommended by a farmer for his cattle ). Strange but true.
2015 found out I had a Mitral Valve Proplapse but again only blood pressure problems nothing else. Got that under control with 1/2 blood pressure tablet and 1 small asprin.
Had bad trip back from uk with pneumonia 2016 which highlighted problems with the Myelin Sheath. ( Bearing in mind I am still very fit and very able)
Lesions only on the Mylin Sheath not the spin ( which is something) and unfortunately MS in the cerabral fluid.
( Bearing in mind I am still very fit and very able)
I am awaitng some medication for blood clotting which will hopefully keep me very able for the next decade…
Who really knows why all this happens. I have put myself on a very strict diet of 9 cups of fruit veggies a day little meat and fish - no dairy no sugar no grains. Meditation and some yoga ( not nomrally inot this stuff ) but is does help. I am very healthy just have these minor issues I have to deal with.
Positive attitude lots of knowledge and keeping well…
Good Luck. Like you I am open to suggestions for any quick fix…
Linda Australia
Hiya,
George