Horrific pain in a part of my head for minutes or up to an hour. That leaves me jaded and delicate with a worse headache.
I had already been diagnosed with APS and was on aspirin when I collapsed on holiday (for a wedding) in Turkey (a 4 & 1/2 hour flight in a 'leg room' seat). In a fantastic hospital I was seen by a cardiologist and neurologist. Rehydrated, chest X-Ray and had An MRI which showed I had a brain clot. O was treated with Clexane inj I finally flew back to the UK and into a local hospital.
Three days after the first MRI another showed no clot. Clexane was stopped. Hospital general consultants said that's not possible. The first MRI must be wrong.
I was put on Warfarin and the anti-coag consultant said I was probably having micro clots??? Can someone please explain what they are?
I'm sorry if I keep popping up asking questions. I'm not usually all me me me but after 39 years of these awful headaches and disabling symptoms, I finally have found people whe get it. I realise I'm not going mad. Such a relief. Ha ha. I'm so grateful for the support and hope I can support others in return. 💋
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WendyWoo50
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Im not a dr. Just APS patient but micro clots are clots that happen in the small veins/arteries. So basically u are probably having mini strokes referred to as TIA's, Transiet ischemic attacks. Hopefully the warfarin will stop them. Good luck keep close eye on ur INR levels!
Hi has major stroke 2011 plus Tia's . Just had an MRI recently that showed up micro clots since my last MRI in 2013 .bit un sure why they have happened as been under the care of st Thomas in that time span and they have looked after me really well .raing my target one to 4 etc. So is a bit of a concern to me these mircro clots are still happening 😬. Went to see prof hunt in November and December and back to see here at the end of January. So hope to have a better understanding of what's going on then.
I think the main thing there worried about is stopping you from having a full blown stroke .
I have micro clots. Never seen tiny clots but cause me lots of problems. I thought I was going mad for a year with strange symptoms and unexplained pain!
When I was diagnosed my rheumy told me I'd been suffering tiny clots in my arteries.
I get them againwhen my inr falls below 3 which happened this week and I had severe chest pain. I went to hospital only to be told there's no clot as there tests don't show it. My haemo has now had a call from me and im sure she will agree I've had another this week when I hear back!
I have had a lot of microemboli (TIAs) or small strokes which take a couple of minutes up to half or an hour to go away. Typical for this illness. This was BEFORE I started Warfarin (I was only on Baby-Aspirin at first)
Anticoagulation at a high level (at least 3.5 - 4.0) and stable (within its stipulated range all the time) is the key.
Warfarin or LMW Heparin are the drugs that work well on APS.
I am Primary APS and have all the three antibodies (incl LA) in high titres since 2002 and selftest every second day as Lupus Anticoagulant can make the INR unstable. I take a Fragmin-shot (the same as LMW Heparin) when my INR goes too low.
The microemboli and high bloodpressure do damage to our body as they are symptoms of too thick blood.
I have today Pulmonary Hypertension and leaking heartvalves and today i try to help others to understand that they must find a Doctor who knows APS and who can give the right treatment before it is too late.
I am not a Doctor I have only tried to understand this illness as best as I can. I have today two wonderful Doctors who understand APS and believe me even if they can not see my emboli or clots. You get Pulmonary hypertension from high blood pressure or/and PEs. At least that was the way I got it.
Hi Kerstin, Just wondering about this, you wrote "I am Primary APS and have all the three antibodies ... ". My doc has told me I am "triple positive", so I have all 3 antibodies in high levels too. What does the term Primary APS mean?
Retrospectively speaking, I realise having talked at medical appointments over the years that I probably had micro clots after my last child was born, I had just come off 6 weeks of Fragmin after his birth, to plan etc. I literally lost the use of my legs, and had to be admitted for quite some time to the hospital, they knew I was flaring and at that stage I had not been told I had Hughes Syndrome/APS, despite my history of actual clotting! This then passed, I am also aware that I probably had quite a bad TIA years back, I was told at the time it was Labyrinthitis, which turned out not to be the case, this was prior to two Aspirin a day. Both these attacks were significant enough for hospital, and were probably micro clots. I was in for a long time with the first incident.
Manofmendip can speak from personal experience regarding the ears and microclots, and his history of that to date. MaryF
Mmm that's made me think now. I have had a few experiences that are similar.
Once I was off work with a bad migraine. I laid on sofa to sleep. When I awoke I couldn't move my legs. Three Drs visited me at home within the hour they thought I was having a brain heomerage and to move me would be too dangerous. It was three weeks b4 I could walk unaided or remove my sunglasses.
Another time I had a very high temp and went to bed fri night. My next thoughts were tuess afternoon. Doctors had visited. My son gave me drinks of water. Mum put me in a bath. I then had terrible headache for about 6 weeks. They said I'd prob had auto immune meningitis.
My son also had the legs thing, really really frequently before 2 x Aspirin a day, also a continuous migraine for 15 months, which broke up quite a bit on the medication. MaryF
It's such an awful thing. With such a range of symptoms. I'm sure people thought I was a hypochondriac. No two days were/are the same. I haven't been able to plan for years.
At the moment suffering severe pain I both legs really badly. Have been in hospital and also had a bad asma attack even though I never had asma before. Put on enahaler and a steroid at night. INR down to 1.8 warfrin levels changed on tues. Bloods being done again next. Tues. Wondering if new steroid is cause of such bad pains in my legs as I have never had it before I was in hospital at Christmas. Pains in lower legs add get really severe in the evenings. P
That sounds awful Rebecca. I hope ur more comfortable today.
I've not heard of steroids causing such pains. I am on steroids myself. I get deep muscle pain in my upper legs. Sharp pains in my shins and my legs give way. But I assumed it was the APS/LupusSjogrens.
I know you have had APS for some years and I wonder if you have now a Specialist in Ireland who can give you the right treatment as you still have too low iNR.
LMW Heparin is a drug for APS if Warfarin is not suitable. Do you have Lupus Anticoagulant?
I suggest you put a new question on our site and you will get good answers from others on here as well as from our Admins.
Thank you Mary. Yes I have a very good Neurologist here in Dublin who actually diagnosed APS very quickly. My INR target is 2.5 so when I get my bloods done on Tuesday hopefully I will be back on target. Pains were gone yesterday but back in legs to day. Will look at Vitimin D as long as it won't integers with INR. Pauline
I am Kerstin and wonder if Prof Herly is the Neurologist you talk about?
When were you diagnosed ? Of course the D-vit will interfere with your Warfarin like everything you change for a short time. (I am on D-vit supplements.) But you should take it if you need them. They are good for us.
An INR of 2.5 is quite too low and I am suspisious if your Professor knows about APS. You should have an INR over at least 3.5 with your symptoms.
Have you had PEs and high bloodpressure?
Read what prof Hughes (who found this illness in 1983 and is an Expert) says. Print off prof Hughes response to "November question of the month" and "December blog" and show it to your Professor or your Specialist.
I still suggest you put a question on our site. You will learn a lot from our members and Admins here.
As my colleague, Mary, has said I have experience of micro clots in the ears, which can cause sudden, transient balance issues, like a feeling of being pushed or turned or the floor bouncing. This is often followed by other symptoms: dull headache, tingling, weak and unsteady feeling in the legs. Prof Hughes referred me to his colleague Peter Savundra, a Consultant Audio Vestibular Physician at The Portland Hospital in London. Peter explained in great detail that the blood vessels in the ears are tiny, only 0.1mm in diameter, smaller than some platelets, and that in APS patients, with sludgy blood, this can cause momentary ischaemia of the inner ear and the acute symptoms I describe above. The other symptoms are due to the brain making chemicals, inappropriately in response to the ischaemia in the ear. What he did say was that all of these symptoms are symptoms of APS/Hughes Syndrome and are not an illness in themselves.
I have also experienced those symptoms and have seen a Professor of vestibular/balance/ear-issues in 2007 and 2008 and he was the person who explained I had micro-emboli/clots and that I should try with Warfarin.
I saw him again as I had problems with my hearing in 2012 and he could then state that my symptoms had disappeared with Warfarin and my Tinnitus was also better but not totally. As I had an otolit-damage in my left ear since 2002 he suggested hearing-aids to help my hearing. My symptoms I had on the right side of my body (from my TIA or micro-stroke 2002) but the damage was leftsided.
Hope you will find that Specialist who you are looking so eager for!
He can give your anticoagulation as clots and dizziness etc are symptoms from HS/APS.
Have I suggested while you wait for an Expert, that you read the book "Sticky Blood Explained" by Kay Thackray. She has got HS/APS and writes about neurological and other symptoms she has. Also good for relatives to understand how we feel etc.
I live in Sweden and bought it in pocket actually. There is also a second one but the first is the best I think. Prof Hughes has written a lot of books also about our illness.
I was diagnosed with APS and Lupus for around 15 years ago. I was put on warfarin back then and a year later was prescribed 600 mgs plaquenil. After symptoms of sharp pain in my left temple and numbness on the left side of my head and face the dr ordered a brain MRI. It revealed I had been having micro clots in the brain as well as in the ear. I am no longer able to lay on my side because of dizziness and have to be careful with my movements so I won't get dizzy. I can only sleep on my back which leads to more issues. My dr has prescribed a 10 mg statin along with 81mg aspirin in hopes the micro clots will stop. I self test and try to keep my INR between 3.5-4.0 but it's pretty tough as I have a super erratic INR and always have. I was getting an MRI every year and the drs. say the micro clots have not shown up on my MRI since 2013 but I do still have them. Over the last few days, I've had several. I'm not sure what this will mean long term. Best to all of you who suffer from this illness and share your experiences. Thanks to all of you administrators who help in so many ways. Thanks to the drs. in the UK who realized this illness and give themselves to research and their patients too so others like myself can make some sense out of it all. I have deep gratitude in my heart for all of you!!!!!
I wonder how often you test your INR in the finger? Have you done a doubletest between a vein-draw at a hospitallab and your finger within some hours and done it several times before you start to selftest on your own? Can you decide about the Warfarin without help?
My numbers differs a lot between the two and the selftestnumber in the finger is 0,8 of INR higher than in the vein.
Are you Lupus Anticoagulant as it could be difficult to selftest with that antibody present?
Do you have a Doctor who understands APS and autoimmun illnesses as you have got Lupus also. I have got a lot of micro-emboli (clots) and they have never showed up on a Scan.
Thanks for your reply. I have been self testing every three days for 12 years. I see a hematologist who I have pretty much begged to read sticky blood so he could understand what the disease is about. He has finally agreed when I saw him back in November to look at Dr Hughes bio and what his research and findings. My hemotologist had a harder time keeping my INR in range than I do. My INR is in range 68% of the time. I have done self test along with vein test and it has never varied too much.
I'm not sure if the LA is once positive always positive or not. I was once told it was but when I look back in more recent records the test is negative.
I have a rheumatologist who knows about APS but doesn't follow it closely. I have gone to the top Drs in their fields in Houston, TX but never had a dr that really is proactive in APS. Now because of insurance issues in the states I have to look for all new Drs.
Your INR should be in range all the time, especially in the lower range, where you can have your symptoms back with a clot or what ever you get.
If you test yourself every three day (sounds very good) you should also take the responsibility to decide about your Warfarin I think. Must be much easier for both you and your Hematologist.
I eat green vegetables every day and if I am too high in INR one day I eat a little more of the greens like brusselsprouts or spinachblades. I always make NOTES!!
I can lower the INR within 15 hours with the greens. It takes 2 - 3 days for the tablets to work. If I am too low I can take a Fragmin-shot (LMW Heparin) till the INR is in range again. I take 5 mg of Warfarin a day and practically never change it. How much Warfarin we take (individual from person to person) is not important but the INR is very important.
If you are once positive to LA you have it in you blood. Once APS, always APS. Look for that old bloodtest.
I do a doubletest every three month at the hospital but I decide about my tablets and everything else now. I can ask if I need advice.
I think that your symptoms could be caused by too low INR too often. You can also ask for a trial of LMW Heparin instead of Warfarin if it does not work.
I am primary APS and triple-positive with high titres and you have also Lupus so perhaps it works different for you. I have told you how it works for me.
Thank you. This is all helpful. I'm trying to get those who care for me to listen and to raise my INR I know I've not yet had a chance to be symptom free. I'm hoping for an appointment very quickly.
To my knowledge I've only had one veinous test in 18 months. That was because the finger prick said 8+ But veinous taken half hour later was 3.3. They said it must been a fault in the machine. (Strange as I was the last person in the clinic that day, and everyone else was ok.)
What do you mean with 8+? I have already forgotten if you are Lupus Anticoagulant.
When selftesting we must do doubletest to see that the difference (if there is any?) is always the same. My fingerprick is higher than the venous test. But the difference is the same with a discrepence of 0,2 INR. Wit a high INR it can be more though.
I always must reduce my fingerprick-value to know what my REAL value is. There can be false vein-values also (from the hospital; too long time to get it chequed), but my Hematologist says we must rely on the venous value. From my notes I rely on the hospital as they send the blood-test very fast.
APs Hi Buddy I am looking for a medical statement or definition on Mico-clotting as it stated in medical field and that they don't show traces of effects and don't show up on Scans -MRI"S or ultra sounds -- is there one anywhere ?? Just went thru this with my Gastro Dc. and she in her statement from appointment that no Micro clotting show ed nor any clotting ?
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Is it normal for Doctors to tell you not to worry if you tell them you think you have an additional clot in a superficial vein? 
Just diagnosed APS, Already have MS, Need support and advice please
In Hospital at mo pleased that a opthalmologist and a doctor seem to support the theory of micro clots!
