APs positive - pain in groin anybody ? - Sticky Blood-Hugh...

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APs positive - pain in groin anybody ?

I have developed a pain high up in my groin - I mentioned it to my rheumy who proceeded to measure my thighs, she also looked for discolouration. She proceeded to tell me that because both thighs measured the same and I had no discolouration she didn't feel I warranted further investigation.

I still have the pain in my groin and cant help wonder if indeed it is a clot - do others swell, get discolouration or redness or the area feel warm ? I have none of that just a ongoing ache and pain. Any other APs suffer's had the same ?

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I would go and see another doctor ie at your surgery to rule out infection, urine infection, or an inflamed gland or something, Sjogrens? One way or another, you need to get checked out, I am sure the GP will help you, especially if your pain is increasing. Best of luck. Also to rule out any damage etc, perhaps coming from the hip etc. MaryF

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I have no urinary infection and It does not feel as if it is the hip - I did have two quite recent very nasty flares of sjogrens so possible a gland it does feel a bit knotted in the area where I am getting the discomfort.

That one is a possibility - thanks Mary.

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Well at least you have ruled out an infection, but do bear in mind you can get referred pain from a joint. MaryF

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I cant say I have hip problems so not sure about that one but the possibility of a gland issue is worth considering. Thanks

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3weeks ago I was sitting at a big official dinner and I actually got cramp in exactly the same place right in the left groin. I knew it was cramp as I had that tight knot feeling years ago in my inner thigh. Then I actual thought a bone had snapped

At this dinner I tried and tried to stretch my leg out under the table. I was in agony. I took a deep breath and promptly left the room. In the ladies I did a john Cleese faulty tower walk kicking my left leg out as much as I possibly could. The slight bit of relief I got was short lived as the muscle then went into a spasm.. OMGoodness. I could have screamed. Determined to sit the evening out, I couldn’t really tell anyone as it was in such a sensitive place and I was on my own. The pain eventual came bearable and I got through the night.

Like you I was left with this painful knot. I tried to massage it out. I couldn’t book a physiotherapist for 4 days. I felt like I had been kicked by a buffalo.

Day 4 the tension and pain subside. I am sure it was cramp and it hasn’t happened since. I drank more water and took a little more salt In my diet.

I spoke to a nurse friend. She said yes cramp can happen almost anywhere in the body.

I just thought I would tell you my really painful experience relatively short lived over a few days and was nothing serious thank goodness. All I was left with was a feeling of being. Bruised.

I would check yours out most definitely if the pain stays the same all the time. My pain was so intense then levelled out and eventually went.

Good luck with it all

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You made me laugh with the John Cleese walk. 😂 I love the way people express things on here. It wasn't the best place to get cramp I have to say it's bad enough when in the calf. This what I am experiencing doesn't feel like cramp although it does feel knotted in that area. When and if I get some answer's I will let you all know the conclusion. Between us all we could write a really humorous book.

Bet it would sell well.

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Absolutely. Thanks for the reply. Good luck

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Hip arthritis is not felt in the hip - it’s felt in the groin. So it may not feel like arthritis but still could be I’m reliably informed (rheumatologist) - similarly to the way that neck disc degeneration can cause severe headaches with no neck pain.

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Hi, the artery in the groin is quite large and if it was a clot you would be in a lot of pain, with swelling and discolouration, so your Rhemy checking, should be reassuring. The only other check would be a doplar scan? Not sure why she didn't do this?

I would suggest if the pain continues, or gets worse, you go to A & E, where they can scan immediately. If anything else occurs then also get investigated.

We are not doctors but I can say when I have had angioplasty and they have entered the groin, the pain can persists for a few weeks. I think it's a tender spot.

It may be you have had small clots or damaged the area and it needs time to heal.

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Hi Ya,

My A&E dept is a waste of time they informed me they dont have a doplar scanner ! I appreciate the admins are not Drs but I have found you lot more informative than most Gps I have seen - if you know what I mean.

Nothing invasive in that area has taken place but could be a micro clot or glands - as I mentioned to Mary I did have two awful flares of sjogrens which can be quite nasty and in my case it was.

Thanks - hope all is well with you.

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I regularly have clots in the veins in my groin and pelvis. As most folks on here know, after having a blocked IVC Filter for many years, I was left with incompetent and varicose veins in both my legs, which begin at the groin. It's no wonder then that I'm constantly clotting in these veins!

I have never had the classic signs of a DVT, swollen calf/thigh, red and hot to the touch etc.

Back in 2005 during my second hospitalised bout of Pulmonary Embolisms, the dopplar showed no clots in my calfs or thighs but both my groins were full of them.

Back then, I didn't even know it was possible to get DVTs in the groin but I do remember thinking that I must have swollen glands in my groins because they were kind of throbbing and very tender.

Because I didn't know you could have DVTs in the groin, I didn't report this groin pain to the ward doctors. It took an acute event while on the ward, when some of the clots shifted from my groins and onto my lungs, for the doctors to send me for an emergency ultrasound.

It hurt like hell when the technician pushed the probe into my groins and I remember him saying, 'yes sorry about that but your groins are full of clots, which is why that hurt so much'!!😱

Once you've had a DVT in the veins in the legs, you're often left with scarring, which in itself can be painful. Scarring can also encourage further clots, as it can cause a narrowing in the vein.🙄

I know your GP is particularly unhelpful but you have APS and therefore a clot in the groin/pelvis should be ruled out.

Maybe mention to your GP that you know of a fellow APS patient, who ignored the pain she had in her groins, thinking it was just swollen glands and then ended up in hospital and on oxygen for several weeks afterwards, due to having multiple Pulmonary Embolisms. What she had thought was swollen glands, actually turned out to be bilateral DVTs in her groins!

That might make your GP realise, that she can't just brush off your groin pain!! 🤔

I'll keep everything crossed for you 🤞Claire xx

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Are you being serious ? Me tell the Dr about your story - You can only mention one thing and if you try to discuss anything else a hand goes up and your shown the door. Interesting to hear you didn't have any swelling ext and that the dopplar didn't pick the clots up.

At least your story will make others realise we are not all classic DVT case's

All these strange symptoms but no answer's for them ! Wish I could find an old fashioned Dr that actually Dr's and gets to the root of the problem. Xx

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The dopplar I had "did" pick up the clots in my groins, there were just no clots seen further down in my legs. That's why I wish you could get an ultrasound of your groin carried out because you would know then, if your pain is down to blood clots.

Personally I think that I produce lots of smaller clots in my calfs and thighs, which obviously don't cause any swelling or heat but as they shift upwards, they seem to gather in my groins, before eventually moving onto my lungs.

I do get pain in my calf, or sometimes behind my knee, or in my thigh but eventually the pain will end up in the groin/pelvic region.

I think I'm most likely making lots of SVTs further down in my legs, which then eventually seem to gather in my groin/pelvic area.

I had a terrible pain in my left leg yesterday, going from the calf up the side and back of my thigh. By the late evening I had the really bad clot pain back in my left groin and pelvis.

Just after 1am, I was propped up on my bed at rest watching TV, when I suddenly had a very funny turn. My chest became painful and tight and I felt tachycardic, I was also very dizzy and nauseous with it and dare I say it, I also felt a bit panicky with it, like my body was telling me something is very wrong inside you right now!

I was perfectly relaxed and calm prior to these symptoms, so I didn't just start having a panic attack out of nowhere, which we all know a lot of the time, is what doctors try to tell us is what's causing our symptoms!!

My left groin and pelvis were still very painful at the time and about 20 minutes later I thought I will try and get to sleep now. As I went to get myself back into to bed however I had sudden onset vertigo. I'm thinking what the heck is going on inside me right now? ! 😯

About an hour later I tried to get out of bed to go to the loo but I still had the vertigo and so was staggering around trying to hold on to stuff to stop myself from falling over.

A few hours later and I experienced two episodes of big bumps thru my chest, which is what I feel when I'm passing slightly larger clots thru my heart and onto my lungs. After that my groin and pelvis pain reduced significantly.

I wonder if some smaller clots lodged very briefly in my heart, hence the sudden onset episode a few hours earlier? Clots have to pass through the heart, in order to end up in our lungs after all? 🤔

Like you say Jilly, how do we ever find out what's going on in our bodies, when it's impossible to get the relevant tests carried out immediately following our symptoms!! What's the point in having a scan done two - three months after the acute APS event??!!!

Our doctors don't have any time to give us and if we are lucky enough to get an appointment or a telephone call with our GP, we're only allowed to talk about 'one' thing, how is that possible when you have a life threatening condition, that can affect every part of our body??!!!

We should all be looked after by an APS specialist but even the very top NHS APS specialists in the county, fob us off with lines like "anticoagulation medication is not prescribed to reduce the symptoms of APS"!!! WHAT??

Our symptoms are caused by sticky blood and/or micro clots. Anticoagulation medications are taken to thin the blood and making it less sticky and therefore reduce the risk of our blood producing clots. Saying that they don't prescribe anticoagulation medications, to reduce the symptoms of APS, only to reduce the chance of clotting, is a complete contradiction in itself!

With that kind of thing being said by the top NHS APS specialists in the UK, what chance do us APS sufferers have, of finding out which symptoms are definitely being caused by clotting events?!

Sorry Jilly, I hijacked your post with my rant but I just get so frustrated for those of us in the UK, who just want some answers and maybe a teeny weeny bit of treatment please. 🙏

Uh-huh, my head exploded again!!! 🤯

Xxx

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Just a short reply then. :-) Rant away we all do it and need to let off steam. I cant help but wonder if that supposed cyst in my left kidney is in fact a clot ! Surely they can do further tests to make sure - but no I have to make do with a supposed diagnosis - it is getting damned ridiculous. If it is a clot it might explain all this swelling.

When you say you had vertigo were you spinning as I did in that crisis I had a while back ? It is very frightening when we get these episodes and on our own - look how long I were in A&E the other week, it was three hours before anyone came near or by me and that was with a suspected stroke ! What the hell is going on ?

The so called London specialists have over ruled Professor Hughes instruction to urgently anticoagulate me. It seem's to be a constant exhausting battle of which at present I am not winning. If I have made error's in my spelling put it down to my functional overlay. They managed to diagnose that with out any issues in a one off 50 min appointment ! My turn to rant now. Grrr

Hope your feeling better now but take it easy. Xx

P.s Strange you should mention the pain at the back of your knee I have that too.

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I didn't see any spelling mistakes and all I have to say about FO is pffftt!!! 🙄. You definitely have every reason to rant!!!

My speciality is writing the 'wrong' in the 'words' order! 😜👍

My clot pain in the leg generally feels different from the groin pain and yet they kind of join up, if you know what I mean? In my leg it's like I've been kicked but inside my leg, like I'm bruised deep inside, the groin pain is more throbbing and can feel hot but again more inside my groin/pelvis.

When I get the vertigo it's like the room is spinning, or it feels like I've been suddenly pushed sideways but I don't actually move, I can experience that sensation even when sitting and lying down🤪. I've been staggering around all day today and come so close to falling over so many times. My INR is high at the moment, the vein draw yesterday was 5.2 but I still feel like I'm clotting, definitely in my legs anyway. Because of my injured foot I'm hardly able to walk at the moment, so it's like I'm permanently living on an airplane, the perfect environment to make DVTs.

Its ridiculous that you were labeled with FO, without any tests being carried out, it's like me NOT being given a Sjogrens diagnosis, without any sjogrens tests being done!! 🙄

Its a joke, isn't it?! 🥴Xx

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Hi leakeadea,

That I do not understand; That veritigo you mention sounds like mine. Lasted only a couple of minutes but ONLY did it happen when my INR had been too low and before anticoagulation.

INR 5.2 in the vein yesterday! Was it the same day as the vertigo? Does your INR change very much from one day to another?

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Like you, I get my vertigo and other clotting symptoms most often when my INR is too low. This time my INR was too high when it happened. 🤔

I have often thought that when my blood begins to go really thin and my INR goes too high, that's when any clots already in my legs, groins, or anywhere in my body for that matter, begin to shift about. The clots then get carried around my body because the thinner blood can flow more easily and the clots then cause all sorts of symptoms all over my body. It's the only way I can understand what's going on inside me. 😯

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That is exactly what I assumed had happened when I were put on the warfarin and heparin and ended up in hospital with chest pain and swelling - and if honest I have not been right since.

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Very interesting!

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I have experienced the vertigo it felt like the room was spinning around me very fast. I was so disorientated after the event I had to go to the hospital - it is all to do with our condition and sticky blood.

I am not on warfarin so unable to say what my INR was but I bet it was low.

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If your body has an event of any kind that could cause the blood to become too, Sticky, then it stands to reason it could become too sticky every where. This is what I do.

You could have very small, tiny clots in a few locations at once. You could even just have the blood a little sludgy in a few capillaries here and there and that can cause all sorts of problems for you, especially for the balance. ( neuro issues in general.)

Smaller vessels behind knee can feel like a clot. Smaller vessels feeding muscles can sludge, depriving muscles of oxygen.

I’ve had DVT’s in arms and not had significant swelling. Usually warmth, yes. Some swelling.

Bruising comes a little later, ( if there is swelling) and superficial clots cause bruising- not DVT’s. A DVT will not cause bruising in and of itself- it is too deep.

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😞why... why?

Dark ages, really.

Functional overlay?!?!

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High Kelly thank you for your input it is useful to read others stories. I had a assumed stroke - everything at my local hospital is assumed these days. I seen in the stroke clinic, the consultant told me I had an 'assumed stroke' but then swayed the consultation to functional overlay of which he said he was interested in.

I had never heard of it, he handed me a scrape of paper with a web address on about the condition. To my surprise when my copy of the consultation letter arrived 'functional overlay' was amongst my diagnosed conditions ! This I am contesting (with difficulty ) through pals. I have never heard such nonsense.

I have been under some of the top specialists in the country and have a variety of diagnosed auto - immune conditions yet in a 50min appointment this imbecile of a consultant comes up with an assumed stroke and FM - what a joke.

Dark ages that's for sure - it's like dealing with a load of idiots here.

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Well said. MaryF

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Are you well anticoagulated? - my standard question I think - but oh so important with this illness!

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Hello Lure,

Hope your keeping well. No I am not anticoagulated I am on duel anti-platelet therapy.

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Duel anti-platelet therapy. What is that?

I am fine as long as I am well protected from clotting with stable and proper anticoagulation.

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Aspirin and clopidogrel, usually is what that means, Kerstin.

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Your lucky to be well medicated but I am in the UK and our NHS is in a mess. It is now very difficult to get a Dr to listen and to anticoagulate.

I am glad to hear you are under proper care and keeping well.

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Hi Jill long time no speak!

So sorry that things aren't getting sorted for you. I was wondering if you had considered if it might be trouble with your sciatic nerve? Lower back problems are often first diagnosed with groin/knee/leg pain. It can sometimes feel like a deep seated hot pain, often related to sciatica. It is a relentless pain, that personally drives me crazy when I get it.

I do hope that you get it sorted out really soon.

MA xxx

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Hello dear lady long time since hearing from you - I hope you are a little better and more stable I know you have been through so much. I do have trouble with my spine but this most certainly does not feel like anything I have had on the past plus I am swelling up profusely. I seriously look 9mths pregnant - something is very wrong here but nobody follows through on investigations and your just left in limbo.

So nice to hear from you and all the others you can always rely on this site they all come to our aid. If it wasn't for Mary. Lynn and ManofMendip (Dave) encouraging me to go and see our very own Professor Hughes I would never have been diagnosed so thanks to all. Xxxx

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Take care Jill. Xxx

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And you - dont leave it so long next time even if it's just a hi or i'm ok. I know when you feel wretched we dont feel like communicating. Big hugs Xxx

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i am going thru this very thing now -left groin down back of leg -behind knee- down to calf then to ankle and just big toe -- -- had x rays today both knee's and 25 TH i will have vascular work up done from groin down to ankle -- i think they have to use another piece of equipment for the calf - as i remember years ago they couldn't do calf the same time as the rest. Different equipment needed for calf. left leg has been horrible and the toe throbs like a tooth ache and this can go on 5 to ten minutes some times - you could almost see it throb . and nothing to do when the toe does that just wait it out . It actually hurts most when in recliner and believe it or not in bed . That left leg can wake me from a deep sleep .If i move my legs to a cooler part of the sheet it feels better till the sheet warms up from body heat -- and the same thing at Doc's no Discoloration nor heat nor swelling.even back in 2009 when i had a huge DVT there i had no nothing showing they found it my ultra sound . it was painful all over behind that left knee but couldn't pin point any area just all over .

Rheumatologist is working with my PCP office and Pain care checking into lower back l-5 is the one in concern.So I am still searching myself . But i won't hear to much more from Doc's till end of month unless something happens to make it happen sooner .-.

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Mine hurt more in bed also... weird...

Also- like you- no significant swelling.

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Thanks for telling us your story and do let us know the outcome - I am sure many will be interested in the results and findings. Bless you all when in a crisis all the old familiar names pop up it's quite touching to see you all.

It's the same old story we know our bodies and when something is wrong - I feel many Gps and consultants would learn a lot from this site.

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My clot and leg/groin pain keeps me awake and wakes me in my sleep too!

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I’ve never experienced anything like that so I can’t advise you I’m afraid. I hope you get this resolved as soon as possible.

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Lets hope it stays that way I wouldn't wish this on anybody.

Take care

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I had a horrendous pain in my groin last august, at first I thought it was a pulled groin muscle but it very soon became intolerable and accompanied by vomiting. I called an ambulance and after being poked an prodded in a&e was admitted. I had no discolouration or swelling just pain. Anyway what I had was a massive bleed in my iliac crest. Basically I was bleeding to death internally and had I not rung for help wouldn't be here. Please get it checked out.

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Oh gosh that sounds awful what you went through I hope all is well now.

You will be pleased that after getting past the receptionist and then having to wait for the nurse to ring I now have an appointment this afternoon - The Dr I am seeing is difficult to explain things to because she constantly rushes you along and you can only discuss one thing.

Thanks for your response I am taking all this on board - or trying to.

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Sorry i havent been in touch. Busy with getting Mom back on her feet.So glad for your appt-hopefully she will have a doppler in the office if not ask her to direct you where you will get one...this is ridiculous. Best of luck and i do mean “luck” as its been a crap shoot for you🤢

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Are you kidding a doppler in her office - she hasn't time to pass wind let alone doppler scan me. Must get knickers on I am running late.

Hope your mum is better than she was. Xx

Do you know something - I love you lot on here, always here when in a crisis to offer guidance. Bless you all

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So... Many doctors reason thusly: if a patient presents with serious, confusing symptoms and patient is really worried, then the diagnosis is Functional Overlay.

Many patients reason thusly: if patient presents with scary, confusing symptoms and the doctor can only come up with "functional overlay"diagnosis, then that doctor is a Functional Moron.

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👏👏👏👏 Well said. 😃

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Well said!! 👍👍👍👍

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In 2010 I had a complication from a kidney biopsy. I had a bleed in my psoas(sp?) muscle and it settled in my groin. Like someone else mentioned I thought I pulled a groin muscle. I was hobbling around in severe pain. Ended up in the hospital for close to two weeks.

Listening to everyone's stories makes me appreciative and thankful for my doctors. I told my husband I'm never moving out of Washington DC. I have specialists who seem to know their shit. I've started asking them when they plan on retiring :)

Leakeadea - I believe you were the one who referenced "like being on an airplane"? I hope you're wearing compression socks.

Now Googling "Functional Overlay"......

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I'm not wearing compression stockings. 😱

I wouldn't even have the strength to pull the things on, plus I have EDS a connective tissue disorder and I can't have anything tight on my body, as it causes me such awful pain!

I'm a bit like Jilly, I've given up trying to get doctors here in the UK to listen, or to take any action, if I'm killed by a clot or bleed, so be it! My family can then sue the NHS once I'm gone!! 😉

Thank you for sharing your terrible experience, it's really educational. I've never once considered the idea that the pain around my kidneys, abdomen, groins, pelvis etc could be caused by a bleed, rather than a clot! 🤔

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My aunt has terrible lymphadema. She recently posted something to the effect of "I can pull up my compression stockings, what's your super power?" I got tennis elbow from my stockings and had to get physical therapy for it. Sending you positive energy....

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Sorry I shouldn't laugh lymphadema is no laughing matter - bless her for having a such great sense of humour.

Sending positive energy back hun.

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Humor is how my family has always handled our "health" issues: MS, cancer, Crohn's, Lupus, stroke, lymphadema, etc. When I had my second stroke, no one had combed my hair for like 5 weeks! My college roommate commented I looked like Amy Winehouse. She brought a spray bottle of conditioner and a wide tooth comb to the rehab facility.

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Is their a way to post an image on here? My husband found and shared a funny picture of a complicated medical history with me. Am thinking some might get a kckout of it.

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I think you can it gives an option to add a photo but I think you have to stick it on a new post. That's what's needed a bit of fun and good laugh.

Got to go and get some draws on iv'e a Drs appointment this afternoon - she better listen to me she can be a feisty little mare. 🐴

Considering all what we suffer many of us have lost pride and dignity to this illness but the one thing we all seem to of hung on to is our sense of humour.

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That is what it is all about finding a Dr who understands the condition who bat's you in the right direction when in a crisis - i'm moving to Washington.

It makes you think when you read others stories just how much ignorance there is in regard to APs. It was a sad loss when Professor Hughes retired - He was easy to talk, listened to his patients and gave you his time.

As for Functional Overlay - I havn't got it just some dumb consultant out of his depth sticking labels on patients to save further testing and cost.

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Unfortunately, my hematologist listens so much to his patients, that he tends to run behind. God help you if you're appt is after lunch! One day I had to wait for 3 hours and I still wasn't seen. The trick is to schedule the first or second appt of the day.

I was able to do a new post to add the image, thanks Jilly!

"Considering all what we suffer many of us have lost pride and dignity to this illness but the one thing we all seem to of hung on to is our sense of humour." I whole heartedly agree!

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I am prepared to wait for a consultant who actually listens to the patient instead of pushing them out the door ASAP. After a blazing row with the Dr I have managed to get her to agree to doppler scanning and a referral to London - I feel I won that battle. :-)

I am shattered so off to bed, nyt nyt

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Hi there. I only recently rejoined this community and don’t have APS as far as I know - “just” Sjögren’s. But so many people tell me that my symptoms belong to Hughes - and I’m also hypothyroid - that I rejoined just to learn more.

I have periods of left sided very intense groin pain and also a really unpleasant pelvic pain which no one has yet even properly checked out. My GP is lovely but completely inaccessible as only works part time and my practice is in crisis due to lack of GPs (2 off long term sick - no replacements).

She did find a medium sized bladder prolapse and thinks the rest could be ligament related. I also have a herniated L5/S1 and some hip arthritis so all this often causes severe groin pain.

I’m supposed to be getting x-rays of knees and hips to see if it’s progressed. But of course I forgot to ask GP to refer me yesterday as other priorities just now relating to skin cancer treatment during my “urgent” on the day appointment with her.

I don’t know about clots or bruising or dvts thankfully. But this is why I’m here to learn more by reading some of the posts as I’m very prone to haematomas and random bruising.

But I do know a lot about Sjögren’s and arthritis and am experiencing lymph gland pain from inflamed/ infected parotids, underarms and perhaps also down below in my groin. We with Sjögren’s have to be extra aware because of the increased risk of non Hodgkins Lymphoma if course.

My GP referred me ages ago for pelvic physio which she is chasing up now. I think they will know more as it’s a specialist woman’s health service.

So I would say to be aware that it could be musculoskeletal rather than clotting - as groin pain is a the main symptom of hip arthritis (both inflammatory and wear and tear). So I’d go to a dr and request imaging ASAP to exclude clots and hip arthritis. Easier said than done in UK I know unless you have BUPA - which of course most of us with chronic illnesses don’t! 🤷🏼‍♀️🙄

PS just saw Doppler thing so well done hopefully this will clarify but don’t forget hip arthritis either!

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It's been a while since I spoken with you I also have sjogrens which can be quite vicious when it flares. The same as you the partoid glands are swollen and the underarm glands seem to have stopped working - I no longer sweat under my arms which now causes me to overheat so i'm hating the present weather. Have you been properly tested for Aps ?

You can learn a lot on here by reading others posts. I also have a thyroid problem Hypo and Hypoparathyroidism. When I paid privately to see Professor Hughes the founder of Aps out of pure desperation he told me I had what he called the big three - thyroid problem's - sjogrens and Aps !

My advice is stick on here and learn about these conditions and if possible get Aps properly screened for to rule it out.

Dont talk to me about the Drs - nothing is urgent these days there is a 12 week wait for urgent cardiology, it's a joke.

Nice to hear from you again.

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An enlightening and terrifying thread.

I've looked up Functional Overlay as it's useful to know what doctors are thinking. It sounds like something which has some validity in certain cases, but has the potential, like the 'placebo effect', to be misused to shut patients up.

Also alarming is the news that UK specialists don't agree with anticoagulation for APS anymore. What do they suggest instead?

Re. the idea that anticoagulation may cause small clots to move and cause symptoms, I've had the same thought. When I was first given apixaban I had several days of unusual symptoms such as new and extended migraine aura, and a night of atrial fibrillation, sweating, dizziness and nausea which all settled down after a couple of weeks.

Re. groin pain, this is an intermittent symptom I've had for a long time. There's a right sided pain which resembles severe bruising and extends into the thigh. And a godawful pelvic pain which I get occasionally - GP thought possible kidney stones but didn't follow up. Since taking apixaban, when I've had it it's been less severe and not lasted as long, so I do wonder if it is APS related.

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Have you had your APS diagnose now? I know you did the tests but got vage answers. Did the antibodies become positive or?

Have you had a Specialist of APS who has not agreed with anticoagulation for APS???!!!!!

Several refuse?

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Hi Lure2, quick update and thanks for your interest. I had three tests and all had positive antibodies for anti-beta2 glycoprotein I with higher numbers each test (this antibody is associated with migraine, a severe problem for me). I also had an attack of atrial fibrillation in the Drs surgery. I was then given Apixaban but a very low dose, which a cardiologist has just told me is not high enough for APS. Nobody can decide if I have APS or not and nobody is interested to be honest. My GP thought not, despite the antibodies. The rheumatologist asked to see me again, but the appointments department at the hospital have refused to give me an appointment. Symptoms not too bad currently - I continue to have migraine every other day but controllable with medication, and energy very low. 'Funny turns' and dizziness have stopped for the moment.

Hope you're doing well!

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If you have got 3 times positive testing for anti-Beta-2-Glycoprotein 1, then you have got a diagnose of APS as to the antibodies. Is that correct understood?

Who gave you the Apixaban and are you still on that anticoagulation? Probably you know it is not enough for us with neurological (arterial) symptoms. It may help to contoll a bit though.

Try to see the Rheumatolgist who wanted to see you again. Do not know why they refused. Do not accept that!!

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GP gave me Apixaban and I'm still taking it. I'm a bit better now I've got used to it. They're reluctant to give a higher dose as I've no evidence of clots and they are afraid of bleeding. I have had TIA symptoms and neuro symptoms but no evidence. Clinical evidence seems to be the issue. There's automatic disbelief of anecdotal evidence ("it's probably 'just' migraine or a panic attack" is the usual response). God knows how anyone seronegative gets a diagnosis!!

It's the hospital appointments people who refused me, not the rheumatologist, telling me there is a very long waiting list and people are ahead of me in the queue. They were quite aggressive about it! I will try and go back, but she wasn't sure what else to do with me. She gave me a lot of tests and MRI and all tests were 'normal' apart from the antibody tests.

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Probably microemboli or microclots. Very difficult to find on Scans. Hope you get the care you need and can see that Rheumatologist again.

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I also believe functional overlay has some validity in some cases. When You have patients like myself who have serious diagnosed auto-immune diseases which do not come with out symptom's then you cant help if this is a label they put on patients to save on further investigation and cost.

I had a well known heamo tell me she does not treat the symptoms of Aps!

The symptoms are clotting -if we clot these clots can cause damage to our organ's lung's and brain. Blood thinning meds have been used for 100;s of years, I feel the risk of a bleed is far less likely than the risk of us clotting.

I am seriously awash with it all - it's crazy.

I found my concentration, memory, balance was all much better whilst taking it but I was unable to tolerate it - or was I ? Did the warfarin shift already present clots that caused my issues. It should be about preventing major issues and quality of life - which I feel is no longer being considered.

Thanks for your input.

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