Strange things happen! Calling on those with know... - PMRGCAuk

PMRGCAuk

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Strange things happen! Calling on those with knowledge of heart issues.

Marilyn1959 profile image
8 Replies

Well, well, well. Had racing heart rate, palpitations resulting in visit to Resus early October to stabilise. Diagnosed with Atrial flutter (different to fibrillation). Put on 2.5mgs bisoprolol and 2x 5 mg Apixaban for blood thinning. Had another Echocardiogram today, probably to check it out prior to first cardio consultant appointment in February.

So guy doing echo asks what happened. Told him results of previous echo including an issue with LV, mild mitral regurgitation, and hypokinetic wall (apparently the wall was thickened). On discharge from hospital consultant said cardio dept would probably want to follow up due to hypokinetic wall. I only had chance to ask one question at the time which was can it be fixed with surgery? The answer was no.

The guy doing the ECG today looked perplexed. I asked him why? He told me that none of that was evident in the scan today and stated I had therefore made a remarkable recovery. I asked him if it might be because of the effect of Bisoprolol but he then said I would have to discuss outcome with consultant who had referred me. He did seem quite perplexed throughout though. So much so I laughingly asked him whether patient results could have got mixed up last time, but he didn't reply.

So whilst results is good news, I now have to wait till February to find out what is going on. That is a very long time for impatient me.................

I have not acclimatised myself or acquired knowledge to understand info on internet. So I wondered if any of you know whether the heart can heal once sinus rhythm stabilises ie the thickened wall reduces and whether thinner blood would enable left ventricle to operate better. If not what explanation can there be for the significantly different scan outcomes and what could have caused the heart episode 190 BPM? I am boggled! Any answers in layman's term please?

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PMRpro profile image
PMRproAmbassador

Will have to look - but I can tell you that at one echo I was told there was some ventricular wall thickening - the next one said it wasn't worth the name! Operator difference?

However - my tachycardia and a/f is confidently said by the arrythmia specialist here to be due to damage to the electrical cells in the heart having been damaged by the autoimmune part of PMR. It started very intermittently 15 years ago when the PMR first started - it may have been either then, it was never caught by anyone. Over the years it occurred more often and more severely. Things changed, I not only had tachycardic (fast) episodes but also bradycardic ones (slow) and eventually I had to have a pacemaker to stop the slow bits to go with the medication for the fibrillation.

Blearyeyed profile image
Blearyeyed

Very frustrating and confusing for you.

Like Pro said it sounds like Operator error , sometimes the position they do the checks in alters results , but it doesn't help you does it until you know which results the Consultant puts the most faith in.

My Echo was normal , just like Pro my form of tachycardia syndrome comes from an abnormality in the electrical cells , in my case likely to be genetic and organic and was finally aggravated / triggered by my other conditions , and not visible on an Echo , it shows up in my ECG and BP monitoring and change in symptoms .

Hopefully , the medication you got is doing what you need , and maybe the improvement brought by your drug has made your heart function improve in a way that it does not appear to have abnormalities on an Echo now in the way poor functioning might have changed its appearance before.

I suppose the only thing you can do is wait , with as much Patience as you can muster , take your Self Care measures and distract yourself until February.

If you get further symptoms though go and see the GP and call Cardiology to ask them what is going on and if you can get some answers or assistance.

Take care xx

SheffieldJane profile image
SheffieldJane

What an astonishing story! I can’t add to the sum of your knowledge but I would find the wait until February a tad trying! Can you not push your GP to push the Cardiologist for an explanation? I would drive myself insane on the internet.

It might just be really excellent news. I won’t mention miracles. 🌺

Duffer55 profile image
Duffer55

I have increased heart rate with an activity.. i am using a Fitbit and it will be anywhere from 80 to 120 with light activity. I did a stress test and failed after 90 seconds so did a nuclear stress test and it was okay. I followed up with a cardiologist and he did not think there was any problems. I know that i am deconditioned and have a follow up in two weeks. What questions should i be asking ? He was not familiar with pmr.

PMRpro profile image
PMRproAmbassador in reply to Duffer55

It is normal for the heart rate to increase with activity - even in trained athletes. Anyone who is unfit will show greater increases with lighter exercise. In someone who is deconditioned due to an illness will experience limitations also relevant to that illness - in PMR it will be muscle function due to (probable) impaired blood flow to the muscles - and that makes a difference.

But the only way to change that is to attend exercise classes. If there are any concerns about your cardiovascular system then there are courses available which are supervised and your BP and heart rate are monitored to ensure you don't overdo things and a doctor is present. Exercise is exercise, there may be differences in how you are able to manage them whether you have a cardiovascular problem or a rheumatic one where joint protection becomes more significant.

valb232 profile image
valb232 in reply to Duffer55

I would be finding a different cardiologist. PMR is not that common, but even my dentist knows about it! Truly, I would try to find someone else. My cardiologist is quite familiar with it, as are all my other specialists (all 10!). Good luck 👍.

PMRpro profile image
PMRproAmbassador in reply to Duffer55

As valb232 says - a cardiologist should be aware of PMR unless they are a doctor specialising in kids cardiology! PMR is the most common cause of rheumatic symptoms in over 65s - and over 65s generally have some cardiology needs.

I am flabbergasted at the ignorance of some healthcare professionals relative to PMR - I have not yet met one here in northern Italy who doesn't know what it is and what limitations it creates. And it isn't that common here - we're a bit far south for much ...

Have you felt better on the meds? I was sent for ecg after the bloods nurse said my heart rate at rest was fast on previous two visits. It showed no abnormalities then I had the 24hr test which showed that, yes, my heart was running fast sometimes but NFA. It still has a flutter sometimes but only a flutter. My heart stays under 150 now but still has regular racing for no discernible reason. Although I don't thinks it's been as high as it was what turned out to be my last day at work 222. And I felt dreadful.

It does seem strange that you had a definitive dx like that and now nothing. Have you rung the consultants office to ask them for the next cancellation. You need them to explain what's going on so you can stop being concerned. 🌻

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