Question re. microclots

[Frodo]

Hi all, I haven't visited HU for quite a while so apologies if this has been asked or discussed already.

My understanding is that APS causes microclots and these are responsible for the multitude of symptoms some experience. I've recently seen several threads on a social media site by people with Long Covid who are experiencing microclots. The suggestion is that this is the driver for LC. But whether it is or not, I'm interested in the fact that some of them are able to get tests that show and confirm this. I was under the impression that no such tests existed, consequently the majority of clinicians don't 'believe' in microclots or acknowledge APS people have them. Am I right?

[jetjetjet]

HI yes I hear that some of my Doc's don't believe in Micro clotting But they do exists. I have over 20 Doc's and I have most agreeing now that they are real . I have 30 lesions in the back of my head in back part of both sides of brain. And I think the micro's have something to do with them . heck even my hemo doc was a battle to get her to finally admit they are for real . I am a triple Positive Primary . great to chat with you where are you located ?? Jet

[Frodo in reply to jetjetjet]

Hi Jet, only just saw my replies. I'm in the UK. I find some clinicians here think that if they can't see something it doesn't exist.

[Ozchick]

After trying to balance my meds, I have (almost) got rid of my intermittent double vision. After a long wait to get into the eye specialist of my choice he is convinced that micro clotting on the optic nerve is causing this. I spoke to Haem about upping the Clexane to 60mg am/pm from 40/50am/pm. After another couple of bloods my f10a has risen by 2 points and he is (reasonably:)) happy with that and back to 3monthly bloods and visits to make sure Kidney function doesn't change too much. Instead of daily and sometimes twice daily double vision it's down to maybe twice a week or less and shorter periods.

If it happened whilst driving I'd have to hold one eye shut with a finger until I could pull over and wait until it cleared. Anything from 5-25mins to completely clear.

I've had my vaxx's and boosters and not having long covid, can't comment on that aspect of micro clots but for me it does exist!

[Madmumma in reply to Ozchick]

Pre diagnosis of x3 positive APS, I had sudden onset double vision whilst driving in the fast lane on the motorway. I didn’t think at the time to shut one eye - I would now - it was one of the most terrifying experiences of my life! I also had a couple of episodes whereby one of my eyes looked like I’d been thumped. Swollen, bloodshot and sore. Think GPs thought my husband was abusing me! Every evening I can’t see to read properly as eyes just don’t seem to work when I’m tired. It’s very frustrating and life limiting. Assume it’s all APS.

[KellyInTexas Administrator in reply to Ozchick]

I was just switched yesterday to enoxaparin.

I weigh 114 pounds.

I’m split dose - 60mg morning and 60mg split dose evening ( exactly 12 hours apart ) plus 40mg Jr. Aspirin.

You may not remember this, but micro clotting has been listed as the blame for my optic nerve atrophy / thinning.

My hematologist said these are considered small arterial strokes.

* edit- the only thing that shows is the seizures-on EEG’s- not the clots or lesions.

[HollyHeski Administrator]

On the occasions I have suffered symptoms ie multiple TIAs - I have had various tests but with nothing showing up on scans etc. I have been diagnosed with micro clots and prescibed higher doses of anticoagerants and anti platelets. Symptoms improved. I am triple positive.Like you I am unaware of any tests that do show micro clots - I've been lucky in the fact I have a good team of docters that do believe we can suffer from micro clots.

[Tofino5]

I experience microclotting and it is painful, lasting varying amounts of time, from half an hour to half days. My specialist knows they are real, but it’s very disconcerting to have them. I don’t know what the test is for microclots, except for ones in the brain that can show up on scans.

[Lure2]

Hi,

I am Primary APS and triple positive with high titres all the time since 2002. In 2002 I had TIAs and also very high blood pressure. I have had a lot of neurological symptoms incl Amaurosis Fugax, double vision, dizzy etc and embolies in the inner ear (micro clots or embolies) constatated by Specialists. I have no doubt also have had a lot of PEs as I have today Pulmonary Hypertension and leaking heart valves. Symptoms severe and unusual for APS but also typical.

Nowadays the Specialists of

APS know they excist but it is very difficult to show on a scan of some sort.

We must have something for our very thick blood like Warfarin etc to get rid of it and try to keep the INR at a steady level all the time.

[Annslack]

Hi FrodoI have been reading various articles about long covid and micro clotting. Much more research is going into micro clotting now. I read that there is new imaging technology at Glasgow university which can show micro clotting. I couldn't find the article to post but will continue to look. There is a site called Health Rising which is all about research into chronic fatigue. It has lots of interesting information about clotting and blood flow. Its probably worth keeping an eye on because the covid research will be very useful to us.

This article was published in the Guardian . It gives an explanation of why the usual tests dont pick up micro clots.

theguardian.com/commentisfr...

One of the consequences of what she explains is that the D dimer test is not picking up these clots because the test measures breakdown products and these clots arent breaking down .

I have read elsewhere that APS patients have impaired fibrinolysis which is the same thing . The fibrin isnt breaking down

This is very significant to me and I suspect others with this condition because I had a negative d- dimer and that was enough for doctors to be adamant that I couldn't have any clotting issues.

I think it's useful to know. Will post seperately too.

[GinaD in reply to Annslack]

🤔In..ter..es...ting... Thanks for sharing!

[MaryF Administrator]

I have met doctors who don't believe in that, but many do go along with this, but it is frustrating if you think you have or have had them, I had this problem as I came off Fragmin after my last child. MaryF

[Frodo]

A thread on Twitter by someone being tested for microclots (testing not yet commercially available) twitter.com/ahandvanish/sta...