Advice on PE misdiagnosis!
Posted , 6 users are following.
Hey guys,
I'm 21, and 8 stone. So in May I attended an Out Of Hours GP with complaints of chest pain. Up until this point I'd had a fair few ECG's, Echo, Stress Test and blood work done due to ongoing anxiety surrounding my health.
However this pain and difficulty in breathing felt to real to ignore. So he sent me to get my D-Dimer tested, the nurse said it came back positive and sent me for a CTPA scan which was negative. The All clear? Nope!
10 days went by and the pain and my breathing worsened slightly so back to A&E I went, redid D-Dimer and it was still positive, another CTPA showed an tiny equivocal filling defect in the lingularbon the peripheral branch of my left lung. Clinically the consultant didn't believe I'd had a PE but the radiologist said maybe and the doubt was to high not to treat. I was started on Rivaroxaban and awaited a respiratory referral, they said that upon looking at the images they could see no real eveidence of a PE and said it was likely 'motion artefact' and the rivaroxaban was stopped.
So my concern is I was and still am immensely inactive, which has been happening for a few months as well as having a heavily reduced fluid intake for a few months also, so I know I'm at risk of clots. I'm still having chest pain daily, breathing difficulties, pain in my legs, I have to walk incredibly slowly and get very dizzy often and have had swelling ankles on and off.
I don't have panic attacks anymore or any real physical anxiety so that avenue as an answer doesn't really work for me. Just mental anxiety over that positive d dimer and the coincidence of the motion artefact, and my symptoms.
As far as the doctors concerned I didn't ever have a clot and they don't know why my d dimer was positive but obviously I'm still in immense constant discomfort. What on earth should I do next?
Any help or advice would be greatly appreciated!
0 likes, 18 replies
debby01 Cooptheloop
Posted
Hi
I am so sorry that you are going through all of this, is must be very worrying.
I was diagnosed in November 2016 with bilateral large PE's and right heart strain, It took a long tme to finally get diagnosed and every time I went to the GP I was told it was anxiety, I even had tests done by a private cardiologist as I was getting rapid / missed heartbeats, breathing feeling strange, detachment and many other things, all came back clear and was told again that I had anxiety and was referred to a therapist.
After finally being diagnosed, (this was after being unable to wlak anywhere, was not eating and hardly drinking, breathless and water retention around the tummy area and spending most of the day in bed) and spending just over 2 weeks in hosiptal I saw another respiratory consultant nad he wanted another CT scan and when I went to see him for the results he told me he had already referred me to Papworth Hospital as he was not happy. Anyway to cut a long story short
went to Papworth for 3 days of tests and have been diagnosed with Pulmonary Hypotension and am waiting on surgery. After speaking with one of the consultants and explaining that I had not felt 'right' for about 4 years he said that this was not unusual as it is very hard to diagnose.I would go back and see your GP or consultant at the hospital and say that something is not right and you should not be feeling like you do, it is your body and you know better than anyone how you feel.
I hope this helps a little
Cooptheloop debby01
Posted
Thank you for your response Debbie! I really appreciate that.
So sorry to hear about your ordeal, I can't imagine what that must've been like. May I ask what were your reasons for barely eating and drinking? I'm curious to see if we have similar reasons.
Cooptheloop debby01
Posted
debby01 Cooptheloop
Posted
HI
I couldnt face eating anything, it made me feel really uncomfortabe and I didnt have the energy, with drinking it was really the last few days before was admitted to hospital that I didnt have the energy and couldnt face it.
I didnt have swollen legs ar anything, but had a lot of water retention which meant when I tried to get up it felt like I was carrying a ton weight around my stomach
debby01 Cooptheloop
Posted
I don't know in all honesty, but when I went to a&e they took me strainght through after doing my stats.
After being discharged I went to my gp about 2 weeks later nad she showed me the results of the various blood tests I had done when i was first admitted and everything was off the scale, including my liver and kidney function, basically when I was admitted my body was slowley closing down
debby01
Posted
Cooptheloop debby01
Posted
I will look into that! May I ask did you have a clear CT scan first? It's only that you said the consultant wanted another scan, I wondered if your diagnosis was missed.
debby01 Cooptheloop
Posted
No, the first CT scan I had was when I went to A& E and thats when they found the clots, this combined with the blood tests. The respiratory consultant wanted another CT scan as he was not happy how things were progressing and felt that I should have been further forward
Sway Cooptheloop
Posted
samuels Cooptheloop
Posted
Hi.
I was mis diagnosed as well but I was of the same opinion with my GP and at the time with the emergency doctor as I had to go to our ED for another condition. I had been feeling pretty well much the same way you are now. We thought i was a pulled calf muscle and I was treating it as such, you know with heat , leg elevated and even Epson salt baths, etc etc, a couple of weeks went by and no improvement and I was getting around extremely slowly, it wasn't painful to touch just hurt to walk on.
Now I have been diagnosed with coronary artery spasms ( Prinzmetal Angina ) and I had to attend our ED again, the triage nurse was actually more concerned about my swollen, hot left calf muscle than my angina chest pain. The doctor had ordered my usual troponin blood test and this time he ordered the D dimer blood test. An hour went by and blood results came back, my troponins were raised but not quite enough to call in a cardio consultant and my D dimer also came back positive so he had me admitted overnight for a CT Scan with a contrast dye put through me the next morning, this test revealed I had multiple clots in both lungs, I was only told the basics about the pulmonary embolism (s) diagnosis and was then put onto Xarelto but I had side effect to that medication so am now on Predaxa, I was told by the attending consultant that I would have to be on this medication for life.
I asked my GP about my new diagnosis of pulmonary embolisms and I was told that it could take up to if not longer 6 months before things start to come right again, the breathlesness would last for awhile to come, the feeling extremely fatigued etc etc would also last up to 6 months on and off, my leg will still continue to puff up every now and then. My GP also told me to keep an eye on a couple of things as PEs are life threatening and a person could die from pulmonary embolisms, not often when it's being treated as in my case but it can happen.
I forgot to mention my CO2 was right on the cut off point for being something maybe a miss inside me
, it was fluctuating between 86 - 93 and blood pressure was high varying from 160/85 - 180 / 90 . This is all new to me this pulmonary embolism so I don't really know much about them, but reading your experience and mine I kind of find it hard to believe a doctor could say it's motion artefact.
Cooptheloop samuels
Posted
Wow that's one hell of a story! I'm so sorry to hear this. May I ask how old you are?
That's scarily coincidental because I believe I have that specific type of angina as well. For a number of weeks I've been having chest pain, jaw/shoulder/arm pain with immense fatigue and no ability to exert myself at all. It's just so difficult for a 21 year old with a past history of anxiety to get taken seriously!
My Left thigh and knee only hurt occasionally when I put weight on them, aside from that there's no clear swelling luckily but I'm dubious.
I'm going to ask for a 24hr Holter Monitor to measure heart activity and attempt to get a second opinion on this CT scan, nobody else seems as concerned because it's not happening to them!
samuels Cooptheloop
Posted
Sorry computer was playing up
. You also can feel the way you are now due to an NSTEMI, see cardio rehab had informed me that with an NSTEMI the heart muscle isn't always damaged or if it is it usually is only minor and like our liver can regrow,depending on the affected section of the heart.I have been told that on some days my ECG shows where I had that mild heart attack and then on other occassions it doesn't show up at all. It took me about 6 weeks to fully recover from that, the fatigueness, breathlesness, felt like I had been hit by a bus or in one helluva a fight 
samuels Cooptheloop
Posted
Now to remember the first part of my comment before computer started acting up. I'm 51 going on 52, your chest pain is consistent with some form of angina, take away the left arm and jaw pain you could say it was PE pain. I suffered from panic / anxiety for 26 years so I know what that feels like and how easy it is for doctors to simply just put it down to anxiety.
I started getting what was diagnosed back then as the small blood vessels in the heart going into , spasms around the age of 36 and got worse over the coming years, when I was 40 an ED doctor actually put a name to it, prinzmetal angina. After my first mild heart attack I put it to the consuting cardiologist at the time and asked him if it was or was not prinzmetal angina, he said he concurred with the ED doctors diagnosis and classed me as suffering prinzmetal angina due to my weird lipids profile.
Cooptheloop samuels
Posted
I've just looked into an NSTEMI but the thing is every ECG I've had has been textbook and I've had A LOT over the course of a few months. It's mainly recently that this pain is worsening but as I mentioned it's hard to be taken seriously when I've had so many false alarms. Could you feel any differences in your heartbeat/rate during episodes?
My troponin has always been less than 2 as well! I just don't want this to get to a star if something drastic happening before anything is caught. I definitely want a 24hr monitor and possibly another stress test but convincing my doctor is another story!
I do suffer from Raynaud's phenomenon as well where my hands will go cold and fingernails purple, that can happen when I'm having these 'episodes' as well and that is blood vessels constricting. Funnily that began after taking propranolol for anxiety and has never left en even after stopping that medication. I wonder if that's repeated or if you have ever had that?
It's tricky because my symptoms could be a PE/Heart or both. It to me just feels like my heart can't pump as efficiently as it used to.
samuels Cooptheloop
Posted
That's just it with NSTEMI's they don't show up on ECG's, I've had 2 confirmed and 2 in the grey area for NSTEMI's, my ECG's were all normal but the troponins told a different story, it confirmed mild heart attacks because of the higher positive numbers. The first mild heart attack apparently did a little bit of damage afterwards as my troponins kept rising in the repeat blood test but as I mentioned before cardio rehab had informed me that certain parts of the heart can repair itself just like our liver can if injured / damaged. Apparently mine has repaired itself to almost normal, sometimes the old mild heart attack will show up in an ECG but not all the time, all my ECG's have been normal when I felt the way you are feeling but in my case the troponin confirmed mild heart attack.
No I don't suffer from Raynaud's phenomenon but I believe it is linked to angina, but don't hold me to that as I'm not 100% sure. My heart beat has always been slow, they tell me they call it Bradycardia, they say it can be normal in some people, medication can cause it or there is something wrong within the heart, I have been told it's my medication causing mine, angina medication and blood pressure, the medication I'm on is suppose to help with both.. It was only this year that I noticed changes in my heart beats, I call them flip flops, the medicalprofession like to call them palpitations but I don't because after these huge flip flops I then do get palpitations, the best way I can describe the flip flop feelings is imagine blowing up a balloon then hold the neck of the balloon to keep the air in it then all of a sudden let go of the neck of the balloon and it does these somersaults and zig zags, that's what I feel and when they settle the pain actually increases. Over the last couple of months the paramedics have been picking up several things like left atrial block, atrial fibralation ( AF) and just recently prolonged QT waves, on all occassions I have been told it's nothing serious or anything to be concerned about. I'm due to have a heart echo next week to see what's going on because I have the pulmonary embolisms they say that the right side of my heart could be working harder than it should be, they say that could explain the flip flops but I had these long before I was diagnosed with the PE's.
I would be going back to see your doctor or at least get a second opinion if you haven't already, you know your body better than any doctor, I believe that not everyone operates the same as the next pesron, we all operate differently, much like a car, same motor and body but motor may miss for no apparent reason even after a process of elimination
if you get what I'm trying to say, ...... just because we all have the same internal workings doesn't mean we are all working the same and the doctors process of elimination will also not show everything up in tests and examinations.