1) How long can a clot be present with out dispersing or moving ?
2) Can or has anyone had a surface clot in the abdomen that can be felt by touch ?
3) Anyone had a proposed cyst that turned out to be a clot ?
4) Has anyone else with APs had 'profound swelling' of the abdomen ?
I would really appreciate your answer's as I am seriously struggling and your answer's would help with my quest to get adequate treatment and future testing.
Best wishes to all.
Can only answer no 1 - I gave a clot in my right subclavian artery, since 2004. It's being kept alive by flap of artery wall and the blood flowing through. Everytime I have a doplar to check its growth, the flap waves at me. I'm monitored yearly, but having had angioplasty three times, they just cant remove it. Yes I worry about it, but its almost become part of me now.
I have got to look up subclavian artery - this is interesting, can you feel it ?
Hang in there with me I have got to look up angioplasty. When I were given a trial of wararin my abdomen swelled up to an enormous size. I had severe chest pain and was admitted to hospital - only to find they didn't have a clue how to treat Aps and stop all my blood thinning medication !
At the time I felt as if something like a golf ball was stuck under my ribs - this has now moved but I still have a swelling / lump just under my left breast which can be seen felt. This lump stings at times feels warm and if I rise or turn awkwardly is very painful. A&E thought I had loops of my bowel and an enlarged heart - wrong. I go for an endoscopy next week almost two years after the event but feel this is not going to give me the answer's. I am in need of doppler scanning but it is difficult to get them to listen because I am being dismissed due to no swelling or bruising.
I am still swelling miserably my assumption is - my taking the warfarin and heparin moved clots already present hence my problems. I have now developed groin pain but because not red, bruised or swollen it's been dismissed and no further investigation has taken place - I feel like screaming I am antiphospholipid you damned idiots.
After finally getting past reception at my surgery this morning I then had to get past the nurse and now have an appointment this afternoon - the battle continues it's like getting past the Mafia.
Understand how you feel - many of us take years to get diagnoses.
For me it took 2 1/2 years for them to find my problem, just by chance, on A & E for another TIA, I got a cardiac specialist examine me, he found a bruie, then things got moving. The artery had collapsed at that point, with no clot - that came later.
Finally got to see vascular guys, but still treated as if the symptoms.s were in my mind! Turns out the sticky blood just made it worse, not the cause.
Keep going, you will get there.
By the way subclavian arteries are under each collar bone. I have both stenoised now.
I have been battling since my 20's with ill health and now 68, now my weapons are drawn to yet again to do battle with my dappy Gp. Keep going she says - I am running out of steam.
Oh they are under the collar bone - learn something every day on here. Xx Fingers crossed
Hi, I can't answer these personally, as my clots were found due to my persistence with making it clear I was 'camping in casualty' during my first pregnancy, I stayed in for many many weeks on two occasions whilst I was on a Heparin drip. No to everything else. A friend of mine with a very swollen belly turned out to have Hughes Syndrome/APS and Budd Chiari Syndrome plus also a Thyroid problem.
Mary F
I did question Budd Chiari with my endocrinologist who was going to refer me to a specialist in Oxford - but it didn't take place because I ended up in hospital with other issues. I am now ready to battle it out with my Gp weapons are draw. It's no ruddy joke is it ?
Would Budd Chiari show up on liver function tests ?
It is best to discuss this with your GP, as far as I know it is not that usual. MaryF
I can only discuss one thing at a time.
??? The blood affects the entire body .
I do not understand what you are saying?
The doctor wants you to make separate appointments for individual symptoms?
YES - your given a short appointment to discuss one thing if you try to discuss anything else a hand goes up and she says you will have to make another appointment - that is when I lost my temper with her I was bloody furious.
1. I think the answer is different for everyone- it really depends on the viscosity of the blood to begin with. When I had the first DVT, the body had to simply break it down. Fractionated Heparin - from a pig- porcine- not LMWH- was given bolus ( in an iV bag) before I was put on warfarin.
The doctors didn’t want it to continue to get larger. That’s when it really gets risky that pieces of the clot can break off and travel to other places.
2. No
3. Not that I know of
4. Yes, and it’s always been an ileus. It’s seen on an X-ray immediately and bowl sounds prove it out immediately in doctors clinic.
Now my doctors know it’s congestion/ hyper-profusion.
Kelly is a blood titer of 50 good ?
Are you referring to the APS antibodies? aCL / B2GP1 antibodies? If so, yes. That’s a significant number.
I think so yes. I spotted it written on my consultation letter.
Thanks for replying
You are welcome. I am glad you are getting the help from consultants now, and I hope you will not have to wait too long.
I’m not sure what you mean by , “ good”.
Elevated out of range , or high would associated with a lab value of ,”50.”
Professor Hannah Cohen will be the perfect physician to interpret test results for you.
What I were asking is a titer result of 50 good or bad ?
Oh, I understand now. My answer is : its moderate going to high.
Dr Erkan Rheumatoligist of HSS in NYC told me: “ it has to be 40 to even get my attention, but I prefer titers to be at 70.”
I certainly have never had my titers that high. I’m mid- high 20’s I think.
If that gives you an idea.
But it may depend on many many other factors- it’s ,” joined up thinking” which is “ joined up factors. Joined up symptoms, joined up... surgical history, joined up labs, joined up ... you get the idea.
You are now finally starting to have your doctors do this.
The consultants at Guys were 'very concerned' about the sounds they could hear in my abdomen and did a MRA with the contrast - nothing seemed to really show up. My local A&E reported looping of the bowel seen on an xray and an enlarged heart which all proved to be wrong - hence my battle now.
I had one hell of a battle with the Dr yesterday but she has agreed to refer me to Dr Cohen who Professor Hughes wonted me to see but as he is now retired he was unable to refer me. My Gp has agreed to doppler scanning - which should have been immediate but she has got to refer me ! I am so bloody sick of this battle and shouldn't have needed to shout to be heard.
When replying keep it simple I am not as knowledgeable with some of the terms used and my head cant seem to take it all in. At present I still have the groin pain and sitting here with a swollen abdomen resembling a beached up whale.
I have had a DVT in my right subclavian vein since 2012. Originally it was 14 in. from Basilic vein to subclavian but now just resides in the subclavian. It’s been a big mess as far as medical care or I should say medical neglect. Anyway it’s here to stay I assume. I have grown collaterals. I do not feel it but my arm swells, arm and hand veins become engorged from time to time.
I do not have answers to the other questions.
I’m so sorry you have experienced so much discomfort and have not found the help you need so far. To me your symptoms sound serious. Good luck!
APS and a chest port?
Recently Diagnosed with APS and a little confused.
APS only when pregnant???
No positive test for APS
Has anyone with APS ever had a bad reaction to Contrast Dye and if so what were your symptoms? 
