Acute Coronary Syndrome associated with Polycyth... - MPN Voice

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Acute Coronary Syndrome associated with Polycythemia


This is a long post so please forgive me.

2 weeks ago I was at the bingo when I suddenly had very bad pain in my left shoulder. It also felt that someone had used a bicycle pump in my neck. After feeling this I started to get chest pain, not intense but like a little squeeze towards the top of my breast. I was scared, stupidly too scared to go to A & E.

The next morning the pain was still in my chest so I phoned the NHS helpline number. They wanted to send an ambulance after hearing what had happened but as we live 4 blocks away I told them not to send one and that we would drive there.

I got called in straightaway and was given a heart trace which was okay. I had to wait back in the waiting room then to see a doctor but with a projected 3 hour wait I went and told the nurse I would go to my GP. As far as I was concerned, if the trace was okay then so was my heart. I never went to the GP.

On the following Sunday I was sitting sewing when, again, I had the sudden, sharp pain in my left shoulder and again the feeling of my neck being blown up.

12 days later and I still had the chest pain and with a week away in a very remote cottage coming up I was getting concerned.

I phoned my GP who told me he was concerned because of my age (56) AND also because Polycythemia can be attributed to a condition called Acute Coronary Syndrome so he told be to go immediately to A & E.

Again we went and again I had another heart trace which was normal. This time I had blood tests which were fine but the Nurse Practitioner who saw me was not happy to send me home without more tests considering the amount of time I had the chest pain and also said she felt I had either Silent Angina or an infection in the left lobe of my heart so I was admitted. My lovely hubby went home and got me an overnight bag.

I got to the ward and the staff nurse filled out the usual forms. It was getting late by this time so I put my PJ's on. I was then seen by a registrar who took my medical history and examined my feet, which by this time were very swollen (I have never had swollen feet before). All of a sudden her Consultant came in, never introduced himself and asked the registrar, not me, why I had been admitted. She told him that A & E had asked for more tests but he cut her off mid sentence. He asked me to hold my hands above my head then asked me if it hurt across the chest. I told him all I was feeling was the squeezing feeling I had felt for 12 days. He then told me to put my hands behind my back, again asking if it it. I replied no. That was the extent of his examination of me before he said "100% muscular pain, no doubt about it". I asked him how could it be muscular pain when it started with sharp pains in my shoulder, radiating down my neck and into my chest, and why were my feet as big as puddings. He then changed his attitude and said I would receive an appointment for more tests and that I needn't stay.

So that was it. I am home again, still with the chest pain and still worried sick about going away. I cannot believe a Consultant in Acute Medicine would dismiss me so easily and without examination. I just don't know what to do now, all I know is this is definitely nothing to do with any pulled muscle. Any advice please.

13 Replies

What a horrible experience for you .

I personally think you should go back to your GP and ask to be referred for an echo which will give a more in depth look at your heart or reassurance if all is ok .

Hope you feel better soon

Helen xx

Some medics have got no manners or empathy! I agree with Helen, go back to your GP, and ask for a second opinion straight away just so you know what it is for definite. Kindest regards Aime xx😺😺

How awful Jilly,,really surprised at the treatment you received.......hopefully you are soon better,then a complaint is in order. I did have a heart problem and stent fitted soon after my P V was diagnosed,then recently when I saw my cardiologist for usual check up,nurse noticed my foot and ankle were swollen,I was sent immediately for eco graph ,fortunately it was not a heart related problem ,just a sprain.....but it could have been other.Best wishes for

Sorry lost site a minute,best wishes for getting better treatment and all to be well. Sally.

Hi Jilly, what a frightening time for your time away in a remote cottage going to worry you so much that it is counter productive going? could you go later?....

I have recently had appalling dental problems and seems it could all be muscular, so now tend not to rule out this, whereas before I had it, would never have dreamed this could be so. But the swollen feet do seem a big puzzle. Perhaps the consultant (who totally lacked any bedside manner) has had similar in patients before and thought you were a classic 'case', but whatever, it is awful that you were treated with such insensitivity and you absolutely want and need to get to the bottom of it all. Hope GP and hospital will organise further tests very soon, so you don't have to wait too long. I understand ECG and blood tests usually do show, if anything 'cardiac' but you need to know, whatever is going on. Loving thoughts and wishes and do let us know how you get on. Tinkerbell

Oh Jilly you poor thing, when I was 42 I had very bad pains in my chest that radiated from my neck down my arm as well, was told it was a chest infection and given antibiotics which did not do anything this was just before Christmas, on the Boxing Day my GP came out to me (they did in those days) as a I was still in pain he was concerned and I was sent to hospital, lucky for me I had private health insurance so was seen immediately where they did lots of tests, then gave me warfarin, which I had a bad reaction too, so then given Hepririn to thin my blood, and nitrate patches and loads more tests done, eventually they sent me by ambulance to A private hospital in London, where they did an angiogram, there they found that I had a deformed artery with a blood clot in and was mimicking a heart attack, so they went back in with Angioplasty and basically cleared the blood clot and straightened the artery no stents were needed and my heart had no damage, that was when I was first put on Aspirin, and personally think the start of my ET, that was 27 years ago now.

So what I am am trying to say push for some more tests don’t be fobbed off, I cannot believe a Consultant in acute medicine did not insist on some more tests such as an angiogram knowing you have an MPN, go back to your GP and insist especially if you are still in pain.

Thinking of you Jilly, so very frustrating, it could be a pulled muscle, but better to be safe than sorry.

Jean x

I too am shocked to read about how poorly you've been treated. Can you contact your haematologist? Or nurse specialist? Let us know how you are and how you get on. You must be so frightened the same thing happens again to you.


Definitely back to the GP urgently and insist on tests until a proper diagnosis is found. Good luck.

Oh Jilly I'm so sorry to hear of the appalling attitude of the A&E doctor. You must pursue this , to send you home after your symptoms have persisted for that length of time, also bearing in mind your existing health issues is very scary , where do you turn for help with symptoms such as you have? I would persist with GP today. Then if he can't help go back to A&E. I have found over the years we have to get proactive about our own health. You know how you feel no one else does.

I hope you get some answers very soon. So you can go away feeling more confident with your health.

With love Sandy xx

I had a similar experience when I lived in Scotland. I was sent home just before I was to have an angiogram. I have had similar pains since but ECG always comes back normal. It leaves me wondering if I really did have a heart attack whether I would just try to ignore it again. I have had other heart tests since which appear to be as normal as expected at my age but I do think that if you are worried you should push for more tests. I hope you have a supportive GP. Let us know how you get on

Very best wishes, Jan x

Hi jilly, sorry to hear what you have been through. This isn't really any help but I thought I would share it to show that it isn't unique to you and you are not alone . My heart problems were the start of the discovery of having an MPN, that's the only thing that was picked up after lot's of tests including a angiogram. They won't say it's possible ( because no one knows about MPNs ) whether the platelets being deformed and sticky can cause these symptoms. I try not to worry when these episodes occur because the heart doctors say there is nothing wrong with my heart. Regular pumping of the feet up and down will take the swelling down on your feet.

Enjoy your holiday xx🤗

I’m horrified you’ve had such an experience. You ve had some good advice given to you. Maybe a visit to another hospital near your remote cottage might be to your advantage. Good luck. Keep us informed x

thanks for all the usual wonderful advice and I am sorry to have taken so long to get back but I did go to my GP and he has arranged an Echo-cardiogram on the 20th of this month. After seeing him, and being reassured I did go away for a much needed rest and relax. I will come back and tell you all about what happens next but I just wanted to say how much your comments have meant to both of us. p.s. if anybody is looking for fab holiday accommodation in North Yorkshire just inbox me and I will send you photos of where we just stayed. The dogs have a heck of a time and so did we xx

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