My husband has APS, diagnosed in 2007 when I walked in after he'd had a TIA, couldn't talk & was numb on one side. He had PE's & lost 1/3 of his lung. Since then he has always felt clots go through his lungs, which are very painful, & has had more TIA's despite taking Warfarin. April 1, 2011, he felt one go thru his lungs, soon his right side was numb & he felt the clot go on to stop in his left forehead. Two weeks later, he started pouring blood from his nose. The ER doctors couldn't stop it & had raised his BP dangerously high, so he had to be pumped with vitamin K for 18 hours until an ENT could go in & cauterize it. The ENT said he had an aneurysm in his upper sinus caused by a blood clot. It was the exact spot my husband felt the clot stop. His blood count went from 18.5 to 10 in 12 hours.
Doctors keep insisting that he can't feel clots move, but we disagree. I'd like to know if anyone else feels clots move & has doctors telling them it isn't true.
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sbncmo
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A poll would be nice, perhaps asking if anyone can feel clots moving & if they receive the same response we have on multiple occasions of doctors saying it is impossible to feel clots moving. Thanks for the suggestion & offering to put it in a poll. I'd like to see the results.
I have on somedays felt like someone is nipping veins from inside my body, I have wondered if this might me either clots or just the stickyness of my blood pushing itself around.
Hi Sharon. My husband has never described exactly what it feels like when his clots move other than it is very painful going through his lungs or it feels strange, like when it went through his head. It sounds like your description would be painful as well. Ever ask your doctor? You would probably get the same response we get - you can't feel them. I know my husband can & I'm sure many others can. Maybe you?
I have a quick question for you. How was your daughter diagnosed with APS? Six months ago I was diagnosed with a blood cut in the vein of my left kidney, however the day before I was passing a kidney stone. The doctor did some blood work and it turns out my Cardiopolin IgM is a bit higher than the normal range, the range is 0-10 and mine is at 11.8. I went to discuss this results with my GP but he told me to speak with the speak with the finalist, the problem is that I will see him on October 18th and I'm really worsens that most likely I have APS syndrome.
I think you already are a new member and it is right that ev you can have a positive diagnose of HS/APS if you get a second bloodtest done within 12 weeks time and also that one is positive.
It is a very small difference and low titre but it is important that you do a second test.
It is very good that the Doctor tested for Anticardiolipin as it is always good to get a diagnose early as then you can be treated and avoid further clots etc. We are here to help you.
I've been sharing the responses with my husband & he liked your description, saying that when he feels clots go through his lungs & his head, it feels like the veins or arteries are being pinched or nipped and they are quite painful. So, I'm very glad you gave a description of how you felt with your clots moving, because he had simply said they were quite painful but didn't describe them before. Thank you very much.
Sometimes parts of my head feel like thick sticky treacle is trying to get through. Don't know what it is but when I feel like that I often get balance or strength problems too
Hi Annie. I've heard people describe the clot movement in different ways. Have you ever asked your doctor about it? And have you voted on the poll about feeling clots move and the reaction of doctors? We are getting an interesting response.
Hi Dave. Thanks for sharing your experience. Have you ever asked your daoctor about them? What was the response? I hope you have voted on the poll we have about this. I'd like to hear more about how your doctor treats you when you tell him/her about feeling the clots.
I've heard of different sensations with it. My can feel them move thru his arms & head as a pricking sensation or in his chest as stabbing pain. I've heard both of these same sensations from others. Vibrations - I'll have to ask my husband if he ever feels that one.
i see this is 5 years old 'sbncmo' and i hope you have had the best of the years you have with your love ones.
i had to reply regardless of the age of this post because i need to let you know yes he can feel the clot or atleast the pressure it was emitting while moving thru the tight spots.
drs always have a txt book answer unless they have experienced it or seen different cases. yes txtbook wise we can not feel certain things because there are no pain receptor but other cases we may be able to feel something different going on in our body.
it is hard to believe certain people when they simply 'say' anything but drs legally and medically say what is factual and what test say to be true. dont hate too much, ive had my share or stares when i am hurting and the test the ordered dont show anything huge.
THIS IS MY STORY:
ive been very close my my body in the way of feeling and seeing every change that i have occured aging and only i can document that. when the past few years of multiple cases of incidents keep happening, all somehow unrelated, many tests were ran, and even had some good weeks with no large issues... drs didnt find anything life threatening so we stop test... regardless of my daily malaise.
one day my blood pressure spiked , sharp pains in chest and i loss feeling on my left side, and collapsed... because i thought i was ok i txted work and bf and numbingly stumbled to my car and passed out completely... my bf took me to the hospital. because of my age and appearance and no medical history, drs released me 100% healthy. my heart rate i saw was lowest its ever been and i mentioned that to the dr. they claimed it means i am very fit. i was not. an athlete can have a ratee of 40. a regular person with a rate of 40 would pass out. i was enraged. and no other drs would treat me for anything claiming my health was immaculate (as if i never fainted or had chest pains or numbness). luckly i did not sufer from any poralosis !!
i started experiencing left side chest pains for months....
later somehow it was on the right side....
when i stand sometimes suddenly there are sharp pains in the smaller parts of my leg so i sit and raise my leg massaging it...
other times its reallllly hot in a spot as if i split boiling water on my leg...
then it got worst... i started choking/out of air/as if something caught in my throat of breathing tube...
.... my blood pressure spiked again after my right arm went numb and i collapsed, i took a blood pressure pill .... it save me slightly... i was on the ground alone at home half in and out of consciousness on my right arm (the side that went numb first so i fell that way)....
the pill dialated my veins and the clot/pressure started to move. the next 8 hrs or so was fairly uncomfortable and nervewreking.... i felt something move up and down my leg as if it was an insect under my skin, it made two stops going up my sides (my guess is it was traveling around or to the organs) then down my arm, stoping where i fell on my arm and back up..... to my amazment, when the 'clot' went down somewhere near my throat or lungs... i experienced that choking feeling that the drs couldnt figure out !!!! it hapened once when the clot went down and then again when it came back up !!! this was me feeling ! no dr can tell me that choking for air was nothing. i found out what it was !
even though i took the medicine and was getting more blood than last time , unfortunately, there was another blockage... i felt the uncomfortable travel up or around my ribs and it vibrated on the bone somehow ... very strange feeling...
it continued towards my breast and stopped where i had my surgery...my arm went numb again and i fainted again.
i woke from the vibrations of the clot going down my ribs area back up to the blockage, back down and back up until it found a way to get thru, maybe broke small peices or another route. idunno.. but it went upmy neck somehow overmy eyebrow it feels soooo strange ive never felt that before !!! i was waiting for it to clot in my chest or face/head and erupt. but it kept on going around my whole body for hrs.
i had a purple /bruise/small red dots downmy whole right arm where there was no blood from fall or clot.. it lasted lucky only two three full days until it was easier to hide, it helped that im taned too so noone saw on top of me trying to wear a long sleeve in the middle of summer.
my local drs arent taking any percaustions because i am not of the txt book age/risk/history ect to be having apparently 'any' of these issues... if anyone reading felt this too and had help please let me know what to tell a dr.
I can tell you are very frustrated. Not getting answers to health problems is hard. I hope you get some help from good doctors.
I thought you made an interesting point about doctors making textbook replies, saying you can't feel clots because there are no nerve receptors, but can feel pressure from the clot moving thru a tight spot. Our experience has been doctors simply saying you can't feel a blood clot, but my husband feels pain with them. I guess HS/APS is still being studied & we learn more about it all the time. Maybe the painful sensation of clots moving will be more understood with time.
I just have to ask you if your husband has HS/APS and if so (I have seen you on our site several times) does he have a Specialist for his pain and has the Specialist given him anticoagulation like Warfarin or something?
I am triple-positive and I have felt a "coldness" through my body when I had exstremely high bloodpressure and it was possible also a micro-PE (not sure).
If you want to continue to talk about this I suggest you put a new question on our Forum.
Yes, my husband has APS and secondary Lupus. He saw a blood specialist for quite a while, but the specialist released him when he stablized. He doesn't have anyone for the pain - just lives with it. He is on Warfarin, 7 1/2 mg a day keeps his INR around 3. Our primary doctor treats his APS now. She wants to keep his INR at 3-4, even though I showed her info from Pro Hughes recommending an INR of 2-3. We compromised at 2.5-3.5. He's been holding steady around 3 & can certainly tell when his INR is higher.
I do not know where you live but as I understand from what you say he does not have a Specialist anymore. I think that he should have a Specialist of autoimmun illnesses.
It is unusual that the primary Doctor (perhaps she has read what prof Hughes says) say that the patient should have a higher value. Most Doctors are afraid to let the patient have a value of an INR of 3.0 - 4.0. So many members here fight for a higher INR.
That INR (3-0 - 4-0 or 3-5 - 4.0 is the value of INR that prof Hughes usually suggests for his patients especially if they have both venus and arterial clots.
I think you should let the primary Doctor give your husband a higher INR which she wants to. He has chest pain and they may well disappear if he is in range. We do not bleed from HS/APS but clot.
Perhaps he could selftest. Do you know if he has got Lupus Anticoagulant positive? They test that antibody together with 2 others before the diagnose. If he has that antibody it can be a bit difficult to selftest as the LA will sometimes give false readings.
Have he read "Sticky Blood Explained" by Kay Thackray. A good book even for you to read.
Give him my regards and I think he can be happy to have a wife who cares so much for him.
My husband does feel better with the INR at a higher level & he doesn't have chest pains at higher levels. I know his doctors have expressed concern over the warfarin thinning the veins & arteries. I think it would be good to have a specialist, too. Our primary doctor is knowledgeable about APS, but a specialist may be better.
Yes, he is Lupus Anticoagulant positive. I haven't learned anything about that yet, having just focused on the APS.
I'll try to find that book. I can always learn more about APS.
Lupus Anticoagulant is the same as HS/APS not a special autoimmun illness. Some here have only LA and others have all the three antibodies.
Why not do as she says as he would be safer and feel better. I think you have misunderstood prof Hughes about what he says about the Warfarin/INR-level with chestpain. I also had chestpain before properly anticoagulated and now have Pulmonary Hypertension and lekaing heartvalves. I am 73 years of age and live in Stockholm and have Specialists for my illness.
How old is your husband?
Does he wants to follow what the primary Doctor says? Try to get a Specialist and also read as much as you both can about this illness as knowledge is power!
There are also books on this site that Prof Hughes has written and please read the "Monthly blogs"(written by prof Hughes himself) which are very good to understand how other people react and are treated.
I checked with my husband on the INR levels that our primary wants him to be at. I posted it backward - the primary doctor wants him to have and INR of 2-3 & we wanted him to have an INR of 3-4. Sorry about messing that up.
Anyway, he feels better when his INR is over 3.
I haven't looked into the Lupus thing yet. I need to do some more reading - just haven't been up to it myself.
Although I respect Doctors I also know they do not know everything when it comes to the human body.
I believe, in my own understanding, that yes you can feel a blood clot travelling through your body. It has happened to me several times. Yesterday, I had a pain in my right lower leg, it began to swell and throb. I couldn't see any visible signs of the cause but I could feel the pain. After what seemed like 10 minutes the pain started moving up my leg and through different parts of my body then slowly disappeared. Last night I had a reoccurrence of that same painful feeling in my left lung, it woke me up from a sound sleep. The pain was so intense it felt like a bruised rib, it hurt that much. The painful feeling continued through my lung cavity and circulated through my body until once again I no longer felt it. I did not feel well at all, kind of felt like my circulation wasn't good, it gave me that feeling like is this it, am I going to die? The first thought that entered my mind was a blood clot, although I am not a Doctor to diagnose this happening 100% as a blood clot, that is how it felt. It happens several times a year. I just don't want to go to the doc. in regards to it because I don't want all those tests and stuff. Don't follow my example. This is my own opinion but I am sticking to it.
I see you have joined today so I guess you do not have our illness here, HS/APS.
This site is only for those who are diagnosed as we are not medical trained and this is not a general site for sick people.
I do think however you shoud see a Doctor. Perhaps you could have too high bloodpressure or something. I do not know how old you are but please see a Doctor. If you are over 70 like me, you should definitely see a Doctor. Especially if you are worried about this it as it can interfere with you sleep or at least talk to a person who knows you about it.
I just say that you should get a diagnose to know if you need Warfarin or some other anticoagulation. A Doctor can help you with these bloodtests for APS!
Hey Guys... I'm new to this...just looking for answers or to find a common denominator.
Three days ago whilst sitting doing work on the computer I had a crazy hot burning feeling on my shin...ahhh, I pulled up my jeans, freaking out . A small vein on my shin was swelling like a injury, a bump , a purple bruise was forming..right before my eyes with extreme fire like feeling..( My husband said " I've hit it on the chair or somewhere today and forgotten, I'm like, " no I haven't" losing it, as I swear I didn't hit it today anywhere)
Rushed to lay down with a ice pack and took at least 30 min to settle down.....
I was adamant it was a blood clot, it came from nowhere , it burned like fire, it felt like it was moving but stuck at the same time......
Next day my leg ached, I was feeling it was tender not just the bruise but the entire leg to the hip. I favoured this leg almost all day when walking. I felt off all day.
Forward 3 days... and same side of body. I had a sudden burning fire in my middle finger and low and behold....a Hot bruise was developing in my vein ....exactly the same feeling and colour as my shin, but smaller as in my finger.....
It honestly felt like it was moving through my veins in the hand then dissipated...
I believe him. 1 If Doctors haven’t experienced themselves, how can they discount it . 2 Some people are more or very sensitive . I am so weird , I have APS 1 PE 3 years ago . My immune has always been ultra sensitive . Stress makes me very ill very quickly . I’m in the UK , when nighttime temperatures drop I break out in drench sweating and clammy . Even with room heaters and heaters beside bed . I’m allergic to cold . Plus with pollen now sunshine , the combination of hay fever and cold .Very unwell and sweaty . Putting an ice pack on my forehead or top of head can stop the sweat cycle . Loratadine tablets stop the drippy nose . My autoimmune condition is just too auto , not under my control .
I just pray I am not flaring up when it’s time for 2 nd Pfizer shot. . I had my autoimmune reaction 20-27 days after 1 st shot . Herpes on lip which I have had for years. Jab was just a swollen lump on my arm for 1 week , after it went into my system , 2 weeks later I had the immune ‘nudge ‘ how weird is that ? I.m happy to have had it . APS not the best to have with Covid plague . My Haematologist said take my Xarelto and statin every day . Without fail . I don’t ride bikes or e scoters as blood thinners and brain bleeds are my only fear .
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