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Sticky Blood-Hughes Syndrome Support
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I suppose you're pale and breathless and standing at death's door,

And if I don't attend you, you'll be dying on the floor,

It is my daily hazard, and really, truth to tell,

I'd love to meet a patient who tells me he is well,

His lumbago isn't killing him, his bunions playing up,

And who doesn't leave his DNA by peeing in a cup.

I'm sick of all you sickies, malingering every day,

Who want a pill for everything you think or do or say,

So pack your rancid troubles, and vamoose, skedaddle, hop,

And dump your sorry carcase at the undertaker's shop.

32 Replies

Gosh, lets hope they sing it in tune. MaryF


I thought the song fitted my recent experience.

After having what is believed to be a stroke and a swelling in my abdomen I took my self off to the Dr.

I explained what had taken place and told her I was concerned that I might have a clot in my abdomen........after a few tests she agreed to refer me to the stroke clinic.

As for the swelling in my abdomen and suspected clot I were told to come back next week to discuss it because she has not got the time.

I am in disbelief !


That is disgraceful. Some only allow a 10 minutes slot .were has all the care gone


I was brought up in the era of when doctor's doctored and got to the root of your problem. They would do house calls but none of this exists now. It's sad to see how bad things have become but even worse to think we paid into this system.......now we are not getting the treatment or care we paid for.


And they did revisit to see how you were and if a child brought you sweets.now you've got my brain working .


We lived in the good times. Now we are farmed off to outside centres here there and every where to see Drs who know nothing about us. Our Drs not only new the patient back then they new the family. Happy days that have long gone now.


We only get five minutes for our GP appointments here!


The corporizationn of medicine. Note: I am not necessarily a socialist, but one's occupation - particularly an occupation such as medicine - should be a call governed by service and not by money. But this is the world we live in. Money and profit are the drivers. Complicated patients take too much time. And your complicated presentation must have its own profit motivation, ergo you must be trying to find a reason to sue me! Get out of here!


Definitely money driven. I do not wish to sue anyone all I were asking were for referrals to see if the swelling in my abdomen is a clot and to see if indeed I had suffered a stroke........I have got an appt for the Tuesday at the stroke clinic.

In the old days those sort of issues would have taken priority.

I would not have been told by the Dr she "did not have time and to come back next week"..........the swelling and possible clot is still pending !


Just saw this Jilly, hope you stay okay until The appointment. Please let us know how you fare🤹🏻‍♀️


Will do.





The same applies to the care industry, nothing to do with health or care should be run as a profit making business.

Everything is being, or has already been privatised, therefore we should be rolling in money in the uk and yet all our governments repeatedly tell us is that cuts need to be made!

I don't know how our governments sleeps at night!

I have said governments because no single party in this country cannot be trusted, once they get voted in, everything changes.

We need to abolish the "first past the post" voting system and have proportional voting instead. Vote for vote this current government only had about 30% of the vote and yet they won the election. What??!!

No one party should ever have complete control because when they do, they never follow thru with their campaign promises. They don't have to keep their promises because they know we are stuck with them until the next election.

It's time that we took control of our voting system, to make sure that every vote counts. If we had more control over who we allow to get in power, we would then have more control over the NHS, social care etc.

As a disabled and very unwell person I feel very strongly about this. Its unacceptable how so many of us are being treated, or I should say untreated, no one wants to be unwell, especially when the NHS is such a complete and utter mess nowadays.

Rant over!

I really hope that the stroke clinic help you, Jillymo, I'll keep everything crossed for you! 🤞


Wow, chill pill needed now you have stepped down from your soap box. :-) I totally agree the poor are getting poorer in every aspect of the word as they line they're greedy pockets..........but enough of that lets get back to our health.

I was shocked after waiting 40mins to see the Dr she only had time to address part of my problem. Year's ago a stroke or possible clot would receive immediate attention..........had she not of examined me for an ear infection I have not got she might have been able to have arranged doppler scanning for me.

I am ruddy furious at being told I would have to come back next week. It could be clearly seen I were very poorly and something was wrong she didn't even examine the swelling in my abdomen !

I shall be putting in a complaint, I have already emailed the Dr in question info on Hughes. I attached the case of the young lady in Swindon that I posted on here who nearly lost here life because her clot was not taken seriously..........I cant help but wonder if she had the same Dr as I ?

I think I need to move out of Swindon. It comes to something when the A&E tell you they have not got the equipment to scan for clots !

I went to the Doc's to be told to come back next week.......Grrrrrr. Are they that miss informed that they do not realise these clots can take lives ?

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I don't think it's any better anywhere else unfortunately.

I've received appalling treatment at my local A&E, similar sort of situation to you, being told that they didn't have the facilities/equipment, to scan for what needed to be be checked. I was told to ask my GP to request an urgent Cardiology appointment, to try and get the tests I needed.

I had all the symptoms of having a heart attack and/or PE and my oxygen saturations were in the 70s% but they still sent me home!

Wouldn't a CT Scan with contrast have showed an abdominal clot? I know they can do those at A&E?

The trouble with GPs is that they are just not medically trained enough to understand APS, or any other rare condition unfortunately. Plus they only have 5-10 minutes in which to assess and treat a patient.

I do know exactly how you feel tho, having spent the last three years trying to get the diagnosis and treatment I know I need.

Complex patients like us are just left to get on with it, despite the fact that our condition can be life threatening.


I am not sure what sort of scan is needed but surely they must have some sort of equipment to rule out clots......after all this is the 20th century. I shall be seen at the stroke clinic tomorrow.

The Dr was running 40 mins late but that does not excuse the Dr not sending me for urgent care.......strokes, clots ext claim lives.

I can not choose what part of me goes wrong so why is she choosing which part to treat ? Swellings, clots, strokes all go to together and I have a swelling in my abdomen.

I have been battling with my health since in my teen's knowing full well I were suffering from lupus........I am now 67 and still battling simply because they do not listen to the patient because they are ruled by a text book and follow it's guidelines.

If you dont fit in the correct category your like a headless chicken going around in circles. Rather than admit they havn't a clue what is going on they fob you off with it's your hormones, depression, chronic fatigue syndrome, fibromyalgia and of course now they can say its age related.

Going privately to see Professor Hughes was what gave me my goal of finding answer's. All along my bloods showed I had positive autoimmune antibodies.......nobody had the sense to investigate further. I was diagnosed with hypo>para<thyroidism in 1976 but because of ignorance of the condition I were not treated until many years later. Am I angry too damned right I am.

If you have got your answer's in three years count yourself lucky.

I love the way my Dr spouts "but you have seen so many consultants".........maybe that's because they didn't have the expertise to diagnose me. I were that 'bleep' desperate I paid for a taxi to take me all the way from Swindon to London Bridge !

Rant over, taken a chill pill..........keep taking the pills Jilly.

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Believe me Jilly I truly understand what you've been thru and what you're still going thru too, you truly have every reason to rant!! 😤

I have received absolutely appalling treatment at both my local hospital and at St Thomas Hospital, who quite frankly I expected to be better.

If Professor D'Cruz hadn't diagnosed my APS, then my next step would have been a private appointment at London Bridge. Like you it's something I cannot afford to do and something that you shouldn't have had to do either!

I am utterly dumbfounded by the treatment so many of us have received, why oh why do doctors try to blame everything on anxiety, or on anything else, other than the actual serious health conditions we have!!

Like you I'm sick to the back teeth of having everything blamed on anxiety!! Everything I've told the doctors is wrong with me, has been proved to be wrong with me and I'm still being proved correct!

During the past year I have been accused of faking my pain, faking my breathlessness and even faking passing out in the hospital ward bathroom because my oxygen ran out!!

I was even accused of faking my TIA and clotting symptoms after my operation last year, by the Heamatologist who belittled me and bullied me and told me "you do not have micro clots, you have never had micro clots and you do not have APS!" I'm seriously considering taking legal action because she put my life at risk and allowed me to suffer for another six months post operation because she insisted that I had to take Apixaban!

I think that because patients experience so many different symptoms with APS and SLE (because they both can affect every single part of the body), doctors just assume we must be hypochondriacs because we can't possibly have so many different things wrong with us!!

Newsflash all you doubting GPs/doctors /specialists, yes we actually can have all those multiple things wrong with us!!

The time you have waited for a diagnosis is completely unacceptable but it seems to be the way it is for anyone with a complex health condition.

I had my first PEs in 2005 but had suffered with breathlessness since my teens and I now realise that I've been clotting since at least my twenties for sure.

If I consider my first diagnosed clotting event in 2005, then my APS diagnosis actually took 13 years.

If I consider when my breathlessness started, then it's taken me 34 years, if I take into account my joint pain, exhaustion etc, then we're talking since infant school and then we're looking at 48 years to get a diagnosis!

It's a joke isn't it??!!!

I've been wondering whether it's worth asking Health Unlocked if we can set up a a petition about the appalling treatment we've been put thru, when trying to get our diagnosis. We could add our signatures and a brief description of the appalling treatment we've gone thru with the NHS, due to being acused of being a hypochondriac or of having anxiety. It could then be handed to the NHS and could also be sent to our GPS and any specialists we're under.

It wouldn't have to be just about APS and SLE, it could include any health condition, as I've been reading so many stories just like ours, on the EDS and the Lung sites I'm a member of too here on Health Unlocked.

What do you think? We really need to show the NHS, the appalling treatment we've been put thru and the only way to do this, is for us all to unite and get this message across to those working in the NHS.


I cant see that doing so would do any good our condition exceeds so many Dr's and consultants expertise because of it's specialised field.........what I do expect them to know is the basics.

I am 'very surprised' to hear you were dismissed at St Tom's they are normally very good.........after all that was where the condition was founded.

We are not here to name and shame but to bring awareness of the condition and it's 'many' complications. I feel we should not have to collapse in heaps on the floor or be a medical emergency to this damned illness before recognition. I like yourself feel as if this condition has taken many years of my like but we also have to remember in the early years.....or at least in mine it was a relatively new founded condition. Of course lupus is a different ball game and not the easiest to diagnose........if you dont fit in the correct margin according to many you simply do not have it !

I had three boarder line results, perhaps had those results been taken at another hospital with a slightly wider margin those results might have been positive. It was the same with my APs results which were continually positive at a reputable hospital that treated the condition but nobody informed me or attempted to treat !

Yet that very same hospital was treating one of the admins on here! I took myself off to London at my own cost without knowing I already had repeatedly positive APs results.

When I saw Professor Hughes he told me what was needed was for them to listen to the patient and not rely solely on blood results.

It was the first time I had felt I were being understood ! He knew exactly what was going on before he had even done any blood work. According to him I had what he calls the big three.

Yes I am angry but hanging on to that anger will not give me back those lost years. All Drs and phsicians have a speciality that they have studied unfortunately it seem's not many of them understand autoimmunity. Let's put this discussion to bed but do feel free to private message me 'anytime' if you wish to talk.

Nyt nyt hun Xx

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I just typed a long response but lost it!! What??! Anyway night night, you can read this tomorrow.😴

I don't think I explained the petition idea very well, so I wanted to quickly explain what I meant.

I didn't mean that we should name and shame anyone at all. Like you said above, bringing our anger and frustration from our past poor medical treatment into our future care, will never lead us to a positive response or result.

I'm suggesting that we try to raise awareness within the NHS, as to how many of us patients have been dismissed, fobbed off, or accused of being anxious or depressed etc over the years. We now have our official medical diagnoses and therefore have effectively proved that we're most definitely not all anxious hypochondriacs! 🤕

If we all signed something like a petition, stating how long it took us to get a diagnosis, how often we were accused of being anxious etc etc. We could maybe get the NHS realise that by NOT "listening to the patient", they are not only causing their patients great distress (thereby making them anxious and depressed), they are also failing to correctly diagnose their patients.

Early diagnosis, means earlier treatment, which in turn means that the patient is less likely to decline further into a more serious state of health.

Simply "listening to their patients" could save the NHS billions, surely that's a win win situation for both the doctors and the patients?! 😉

Sorted! 👍Xx

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Amen, sister!!!!!!


Hi Kelly,

Just to let you know the stroke clinic are arranging another brain scan to look for new scarring.......I have plenty already from past TIAs and small blood vessel disease.

Yesterday afternoon I had to go back to my surgery. Well, well, well, I had to smile I had complained about no high chairs for infirm patients in the waiting room.......there was one aptly placed for me. The Gp had a personality transplant and were rather pleasant.

Whilst in A&E the other day something had shown on my x-ray! Strange as I were brushed off with every thing was ok and it was unexplained swelling and pain put down to maybe reflux !

My Dr tells me she thinks I have a problem with the transverse bowel.......I wasn't aware it sat so high up in the chest cavity. A tracer scan is being arranged to take a good look at the bowel and other organs and the blood supply to them.

I have no explanation for the fluid build up in the same area as yet. I am sure as things unfold and with investigation I will get answer's. The main thing is they are now doing something. How strange they can suddenly do a tracer scan when I were told they did not have the facilities to do this type of scanning !

The Dr rang me at home last night ! ! ! If I have any more episodes of severe pain ext I am to go straight to A&E or ring her so that she can contact a surgeon ! I have suffered with bowel problems for years, constipation and diverticulitis but I am so surprised at these findings........what bowel up by my heart now there's a novelty that I never new of ?


I still do suspect you have more than one thing going on.

A touch of this and a touch of that... sludging/ micro clotting blood throughout . Can very well cause paralytic ileus to smaller bowel loops- not transverse colon. ( but I’m not sure..mine were in the bowels loops) segmental spasaming due to clotting and vaso congestion)

Possibly/ probably more TIA’s- may or may not leave more lesions. You know more about that than me.

When I would go into paralytic ileus I would feel a lot of pressure where my the bottom of my rip cage seperstes- - so pretty high up.

It would feel very tight and distinded. Into surgery I would go. ( no bowel sounds/ or diminished bowel sounds via stethoscope. Or... very high pitched/ sing song bowel sounds )

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I cant say I have low or no bowel sounds far from it........it has been making sounds like a blocked sink. I have been "very distended" in fact I still am. Like you I suspect there is more going on so it will be interesting to see what is taking place in that abdomen of mine.

I am now going to google paralytic ileus out of interest.

I frightened myself half to death this morning I came across toxic mega colon......the photo's were not nice ! :-(

The Dr seemed very concerned by results sent from A&E.

I wonder why these result were not found until after I were given the all clear at A&E, oh well we will have to see what the scan's show.......I shall keep you informed.

I just looked up paralytic ileus it definitely isn't that.


Thanks for keeping me up- I am worried.

In the mean time... try to avoid foods that are trigger histimes in body... this triggers MAST cell activation. I can’t say I have a handle AT ALL on understanding this... but a lot of us auto immune filks have this. ( it’s the same thing that “ normal” people get when red wine triggers migraines for them!)

Avoid aged hard cheeses, and processed or aged meats like salamis, and fermented foods like Sauer kraut- no vinegar- no chocolate.

No left overs. No canned items.

I’ll screene shot a pic of a very good link and post it here- I’m on the fly very quickly.

Off to low vision therapy.


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I thought you were flying off somewhere nice when you said "on the fly" I hope your therapy goes well.

Ok, I shall stick to the red wine and avoid the mast cell foods. :-)

Only joking I do not touch alcohol. At present they are only surmising it is my bowel because something has shown on the xray done whilst in A&E.......my question is why did A&E let me go telling me everything was normal when they did not have all the results !

Thanks for the info.


Glad to hear that’s not it, because autonomic dysfunction can cause paralytic ileus. Aps can cause autonomic dysfunction. So can other autoimmune diseases that run with APS.

Other issues with bowels, I’m learning, can be from MCAS- mast cell activation syndrome. Mast cells are immune cells. When disrupted ( allergic responses...) they can even disrupt the clotting cascade. I don’t really understand it al all but antihistamines and eating a low histimine diet can help. Google this and try it. It can’t hurt. No fermented foods. No left overs. No hard cheeses. No chocolates. No wines. No glutens. No citrus/ no pineapple. Eat very fresh. No beans apparently. Nothing with vinegar. Just look up low histimine diet.

Anyway- it’s all tied together like a tangled ball of yarn and this is why it’s important to have a very good rheum and heme working in unison.

I’ve experienced all of this- and been in and out of many surgeries and organ sickness from it. ( pre diagnosed. So baffling.)!


How are things now


Waiting for further test's and scans at present on my abdomen.

The swelling is very much the same and I am also waiting for another brain scan to see if that spinning episode was another TIA or a stroke ! I am still off balance but it's getting better as time goes on .


How are they anticoagulating you at this point


I have done that soooo many times it is infuriating when that happens. Gosh your on the ball tonight to have rewritten.

Well said! I agree with every word, in the long run it would be more cost effective but I cant see it taking place......."what Drs that listen" what ever next. Talking of Drs I have got stroke clinic this morning.

I had a "lovely caring lady" ring me up to offer me an appointment then at 4-15 after getting past the dragon of a receptionist I have the Drs at 4-15 to discuss scanning.

They are normally very good at the stroke clinic

I feel slightly better in myself in regard to my balance but swelling is still not subsiding ! I am sure it is fluid somewhere in my chest cavity.......maybe pulmonary edema.

If only they realised all this backing and forth will probs wipe me out for a few days but hey ho it has got to be done.

I love your little emoli's I cant find them on my laptop but I expect they are there somewhere.

I hope these appointments aren't going to be another waste of a clean pair of knicker's. I have got to find a wigwam to cover this swelling......maybe a maternity dress will do the job. :-)

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Good luck today, I really hope you get somewhere and your clean knickers aren't wasted !! 😉

I completely understand what you're saying about the effort it takes to get to appointments. I get taken by hospital transport, so I have assistance but the downside of that is that you have to be ready four hours before the appointment time. I have an appointment with the Thrombosis Team next Wednesday at 9.40am and so I must be ready to travel by 5.40am!!😱 I may as well not go to bed as I will need to be up by about 3.30am, to give myself enough time to get ready!!

I've only left the house once since being in hospital at the beginning of August and that was to see Professor D'Cruz at Guy's Hospital. I'm essentially house bound and any hospital appointment will be so difficult for me and usually send me into a flare up for the next week or so. No doctors seem to understand this, not even my own GP.

Please let us know how you fair today xx


Just wanted to say that I get terrible swelling in my abdomen too, it gets bigger sd the day goes on and by the early evening I have what I call my Father Christmas belly! I also get fluid in my lungs every day but this could be because my lungs are shot after all the PEs and micro clots that I've had.

I know that when your heart, lungs or kidneys aren't working properly, it can cause a build up of fluid in the body. I really hope they give you some answers today, it's the not knowing that leaves us feeling so frustrated, as until we get a diagnosis or a cause for our symptoms, we can't get any treatment!

BTW, the emojis are on my mobile phone keypad, I wouldn't know where they are on my laptop either! 🤔


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