I hope you all had a nice Christmas and I wish you a Happy New Year.
I was sent this link by a friend (after being very ill again this week) and found it very interesting because as you know Antiphospholipid patients often have Microclots.
The BBC interview (link in the text) described how I feel to a tee and went on to describe new treatments in Germany.
I am convinced the treatments will be used for treating APS, ME, CF and POTS in the future as well as Long Covid and possibly even Fibromyalgia.
Monday evening I visited a recently bereft neighbour (a few hundred metres away). When I returned I started to have pains in my head, the type I have come to associate with Microclots moving through the small blood vessels in my head.
Tuesday I awoke with no pains but at 8.50am I had an intense pain that felt like I had been shot in my right temple.
Other pains followed thick and fast I couldn’t get out of bed. At 3pm I tried to get out of bed and went downstairs. As I sat in my chair I felt worse and the intense pain made me feel sick. I went straight back to bed. I was sick.
When Alex (my son) came home, about 5.30pm, he found me laid across my bed with a bowl under my head, hardly able to speak.
The pains were terrible and I was very sick with the pain. It felt like my right eyeball was going to explode.
About 3am I felt a lot better.
Wednesday I was too ill to shower or dress. Thursday I went to physio (impinged nerve in shoulder/neck) and she could feel a lot of guarding on the right side of my head, caused by pain, and she was concerned.
When I returned home, I felt washed out and had periodic pains in my head.
I am interested to hear your thoughts on the link attached and the BBC interview.
I think that you should have called an ambulance and had yourself taken to Hospital, especially as you were on your own. I do hope things have improved.
I know I should u r right. I was too scared to go in hospital at the moment. I’m ok now. Well almost. Did u read and watch the article? What do I think. It’s hopefully for us isn’t it? X
Do you think you have long covid or *only* APS? The article is interesting and almost feels as though they're describing a lot of the symptoms of APS. The bloods would come back as 'normal' if they weren't specifically testing for the three tests for APS.
Thanks for ur reply. I don’t think I have long covid. Just APS. But that article seems to sum up how I feel and how many of us describe. If Covid becomes a blood clotting disorder with clots and Microclots, and that treatment helps them then it’s more than possible it will help us too. Let’s hope 💋 x
Thanks for finding and posting them - yes I really do think covid and long covid will lead to a lot further research and many dots will be joined.Micro clots has been a subject here many times. For me it effects my heart, the pain is so bad sometimes that yes I think I'm having a heart attack, like you I ride it out, as going to hospital is not going to achieve anything. Fortunately for me I have extra anticogeration to help keep these in some control.
Wendy, this sounds a terrible ordeal for you, something no one should go thru, your so brave.
Again thanks for posting and wishing you a very happy healthy New Year. xx
Yes there's no choice but I do emphasise- even when we know what's going on, there is an element when in pain we question ourselves - is it or isn't it?!! Yes hope they breakthrough / combine research to improve life for us all. x
I haven’t watched this yet but overall I do believe that this will lead to better treatments and put a spotlight on autoimmune disease.
It’s interesting the description of the pain in your head. It was a microclot that caused the damage in my ear. About a month ago I had pain in my head that I assumed were microclots but this is the first time I think I’ve seen anyone else discuss this (I think).
University of Michigan APS specialist ( rheumatologist) Prof Jason Knight has a dedicated research lab.
I posted on theses a few months back . Please look through my posts to find. Extra cellular Net Traps. It talks about this almost exactly- and specifically about Covid and future APS treatments.
I can’t say I understand lot about the German physician’s treatments. I don’t know a lot about apheresis. It does remind me a bit of plasmapheresis, which has to be done a few times … if antibodies persist. I’ve been told that’s a bit dangerous, and not a risk free solution , but the bigger problem is that unless coupled with a more permanent solution for damping down the antibodies, it’s a maintenance temporary bandaid with high risks, so this is why it’s reserved for CAPS.
Again, I can’t say I really quite understand the German doctors approach specifically- may be more of a hybrid between dialysis and plasmapheresis…(?)
I do admire physicians for trying new techniques- especially during pandemics.
Do find my post re University of Michigan, one has a video explaining these traps.
Thanks for sharing this article from the guardian, plus interview. Everything must begin somewhere.
Also - have a look at INOCA - Cleveland clinic
( Ischemic Non Obstructive Coronary Arteries)
Can happen from micro clotting events and / or spasms
I’ll try to have a look and link it on .
It does not mention APS specifically, but does refer to it formally being called Prinz- Metals.
I believe it very well could explain sticky blood micro clotting as well, but it does mention specifically micro plaques. ( grrr.)
Wow! When I’m feeling better I will try to find ur post. It seems there is hope! Thanks for ur detailed answer. Bit over my head in places. Especially at the moment. Take care. 💋 x
Hi Kelly. How are you?I can’t seem to find the article you spoke of. Is it possible to post it here please. Sorry to put you out but I’m keen to read/watch it. Thank you xx
I will look back and post it here on your ( this exact) link later today.
For me here in Texas I’m 6 hours earlier that you are- just leaving home for my INR check. ( three- four times a week. ) takes forever waiting in lobby to be called forward after registration ( which also takes forever) due to hospital staff shortages.
Yesterday was migraine day for me so moving through molasses today. ( treacle I think you call it.)
I think any work that can be done to better understand and treat micro clotting has to be a good thing, even if it just enables better testing to show the micro clots so we aren’t seen as crazy people who imagine their symptoms. Really hope this might be another way to address APS for those that don’t respond to the usual treatments.
Thank you for sharing.....so sorry younare going through this....very scary! I am so glad more awareness /research being done on micro clotting....I will follow....I do believe the covid long haulers and APS overlap in disease and symptoms.....I am probably both categories. I hope we get all medical knowledge and new therapies out to l our Dr's.
Thank you all for your kind thoughts, I am back to normal now except a bit more noise/stimulus sensitive.I’m interested in following this up so if anyone has any links, information or knowledge on Microclots and/or treatments, research etc. I’d be pleased to hear from you as I’m sure would others following this post.
Keep well and keep safe 💋
PS just got your information:
My sons partner is a nurse, currently on the covid ward. All Covid patients are given clexane twice a day.
The nurses who don’t wear their masks properly (punched at the nose, secured at the sides, under the chin) have covid and those that wear them properly haven’t!
Please wear your mask properly and take it off carefully. Imagine it is foaled in acid - get rid of it carefully then sanitise your hands!
I went back and trawled through my posts and I didn’t see it either.
I remember during that time frame I posted a few comments and a few posts that did not go through at all. This must have been during that brief time.
At any rate, this is a much lengthier and much more academic ( really for wither clinicians) grand rounds.
In many ways it’s overview is more interesting than the original one I put on. ( starts with a great history of APS.)
This one does include the “spider man spitting out a spider web” analogy of net traps. This is the crux in a way of what the German clinic was getting at. These net traps are very Architecturally adverse and set up a prothrombotic state. They are meant to capture “pathogens” and yes, they do.
As you will hear in the lecture, APS patients tend to really “throw to many of the spider webs out.”
Gosh, I do hope you are feeling better?? If that happens please call the out of hours service or your GP or go to hospital, sorry for late answer been away for a while. Another thing to consider is getting your B12 checked. pesquisa.bvsalud.org/global.... I made sure I had good levels after Covid, months back and in addition I took Ubiquinol, (all checked with GP first). Regarding Fibro, I ordered my own tests from Medichecks years back and that did show up my Thyroid problem and B12 problem that had not shown up in tests with GP. the-rheumatologist.org/arti... MaryF
Thank you Mary. I hope u r ok.I have had the private tests u recommend and all came back spot on except vit D I take the max dose of vit d anyway and even after returning from 2 weeks in Turkey 🇹🇷 a few years back, at 85degrees, they tested on my return an I was still low? Not much else I can do xx
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