Self diagnosing again - but what to do?

[whisperit]

Hello again lovely people,

Overnight I had a brilliant thought (modesty hem hem).

It struck me as suddenly completely obvious that the fleeting "pinching" pain I have been experiencing in my heart is actually pericarditis. It might also account for my persistent tachycardia and sensation of a "thumping" heartbeat.

My initial presentation a year ago had been shortness of breath, and I had heart and lung symptoms that led to an initial diagnosis of heart failure. Subsequently, lung inflammation was seen as my priority problem and overlap syndrome became the diagnosis of choice.

At my review meeting with my rheumy seven weeks ago, I brought up the chest pains (they are distinctly localised to my heart) and persistent tachycardia. He dismissed any suggestion that they had to do with auto-immunity, and said I should go to A&E next time they were bad. I did this, and was discharged, after having been assured that there were no signs of a heart attack, although an echocardiogram showed some issues with my ventricular function.

My GP has prescribed B blocker in view of the cardio issues, and requested an assessment for POTS. The cardiologist replied to say he doesn't think I have POTS, but he will consider seeing me in due course - perhaps several months from now.

I'm on 6mg prednisolone plus hydroxy anyway. However, no-one (including me) has yet suggested pericarditis/serositis.

I do not have any date for a further rheumy review, and they are booking into March at present.

So here are my questions:

1. What do you reckon to my self diagnosis?

2. How do I proceed from here? GP (yet again)? Ring Cardiology? Rheumy nurse? Or just wait?

Thanks for any thoughts x

[EOLHPC]

🤔....a local lupus friend who has childhood onset lupus has been going through the diagnostic mill for something similar...I think you may be on to something...the investigation route has been v similar to yours too...gp provisional diagnosis & unsatisfactory treatments, also comments from rheumatology, and most recently cardiology referral...at first consultation told they'll stay on the case and figure this out...is now going further specialist cardiology tests. My friend has had to push hard for this referral...this has all taken many months from onset of symptoms and a lot of persistence from my friend...so far no pericarditis diagnosed, but my friend is being taken seriously

So, what about: ring Rheumatology & cardiology clinics & clarify when you can be seen as cardio symptoms are persisting & greatly affecting + limiting quality of life and you are feeling v concerned do need to be seen asap. If there are any cancellation can you slip in sooner rather than later. Also, ask your gp to write requesting same

Hope something in there is useful

🍀🍀🍀🍀 coco

[whisperit in reply to EOLHPC]

I am thinking along those lines, but I am starting to despair.

[long rambling moan deleted here!]

When my rheumy says that a 4 monthly review is adequate and my cardiologist has not seen me since last March, I begin to wonder whether I am over-reacting; maybe this is all I can expect....?

As ever, thanks for your thoughts, coco XXX

[EOLHPC in reply to whisperit]

Yes...sure can relate...please don't let them get you down....you know your bod better than any of them, and have every right to prompt attention: go for it

Take care

🍀😘🍀😘

[Georgie-girl]

Totally agree with BC. You have a right to prompt attention so phone them all. Rheumatology, cardiology and your GP. If you feel something isn't right then it probably isn't as you know you best so don't be put off of fighting your corner.

Good luck.

[Hidden in reply to Georgie-girl]

It is horrible that we are left to self diagnose in this way but of course I entirely relate.

I don't know anything about pericarditis but I get horrible palpitations a lot - they sometimes keep me awake or wake me at night and I'll have spells where they are really bothersome during the day too. Whenever this has been checked by ECG all they find are exctopic beats.

But alongside high BP, dizzinsss and disequillbrium, I do sometimes wonder - but then I decide it doesn't bear dwelling on. Also I worry that if I mention it to my GPs they will immediately reduce my Levothyroxine again as they have done in the past. I'm sure it isn't related because I don't have other symptoms of being overmedicated. I do think it's part of my autoimmunity though and I've learnt to trust my instincts.

I've never seen a cardiologist but my neurologist tells me I have a form of mild dysautonomia. Both my parents died at 73 of sudden cardiac arrest and my carotid arteries show mild disease and plaque so subclinical atherosclerosis - so I've reason to worry too but I've decided to worry about one thing at a time! I think if you feel this is pericarditis and part of lupus then you should trust your instincts and push for clarity. X

[PMRpro in reply to Hidden]

"Whenever this has been checked by ECG all they find are ectopic beats." - but have they actually done an ECG DURING an episode???????

[Hidden in reply to PMRpro]

Yes I had a holtor monitor for five days about two and half years ago. And they have seen them each time I've had an ECG so I've been reassured this is my "normal".

[whisperit in reply to Hidden]

I had an 'event monitor' for 5 days last year, but with similar results, TT. Yet it doesn't take much effort to find stuff that makes it clear that Sjogren's, SLE etc are not uncommonly associated with pericarditis, pulmonary hypertension, and orthostatic symptoms related to dysautonomy. This medscape page is clear, for instance emedicine.medscape.com/arti... . It baffles me that medics are so often resistant to accepting their (well informed) patients' understanding of their own condition....

[Hidden in reply to whisperit]

Ach it's the whole "trust me I'm a doctor" thing again?! You are completely right - it should be the other way round i.e. "trust me I'm the patient!".

I have said this here before, but when I was a Scottish ambassador for NRAS still, we had the Scottish patron, a senior rheumy and immunologist as our guest speaker a year ago. He spoke of significantly increased risk of CV disease in RA (said it goes without saying that this applies to Lupus too and Scleroderma most of all) and spoke of the importance of routine checks for all patients.

So on 7th January of this year I saw rheumy no.2 and asked him about this. He said this only applies to those with aggressive seropositive RA, often smokers, rather than to people like me. I asked about the risk for those with CTDs (he seemed to think RA is not a CTD as such) but he responded "your antibodies are negative so you don't have a connective tissue disease so are not at increased risk compared to the rest of the population!" Then rheumy no.3 finds +ANA with pattern suggestive of Scleroderma and lip biopsy very positive. Hmmmm I wonder what rheumy no.4 will say when I finally get allocated to one? X

[whisperit in reply to Georgie-girl]

Thanks, Georgie-girl, I will do. One of the most frustrating things is that my symptoms are decidedly not trivial (as a nurse, I do have some perspective on this) . So when I present a problem to my doctor, I only do so if I genuinely feel it could be significant, and is having a major impact on my functioning. But they seem to be tiring of my repeated badgering....

[PMRpro in reply to whisperit]

I used to have that problem - I had also done my waiting and seeing BEFORE I got to the practice! But we also tend to leave it a bit late...

[Georgie-girl in reply to whisperit]

Don't worry about them tiring. Just keep badgering. This is YOUR health. Not theirs.

[Wendy39]

Great advice. Keep banging on those doors. Good luck.

[Hidden]

Hi whisperit

We messaged a few weeks ago and it was looking hopeful, so I'm sorry to hear this. I don't see how a cardiologist can possible say you don't have PoTS without a) looking at you and b) doing autonomic function tests especially a tilt table. It irks me when specialists make uninformed statements, especially when it's not their specialist area. There is categorically no way of diagnosing any condition of the autonomic nervous system without tests. I'm disappointed for you.

Can you try and see Dr Gall in London? Even if it's not PoTS, he will help you get to the bottom of things.

Take care.

[whisperit in reply to Hidden]

I've been down to my GP and then on the phone to cardiology this morning. The GP I saw today was thorough and seemed - at last! - to appreciate that going from a person who worked at 3 part time jobs and spent my weekends mountain biking a year ago, to someone who struggles to stay awake just sitting in a chair all day long does not represent therapeutic progress!

She also agreed that spending hours every day - and night - feeling nauseous and shaking uncontrollably ought to prompt more than a 4 monthly review by my rheumy.

So I now have an appointment for a tilt table test in 5 weeks, a referral to the neurology team and an expression of concern and request to expedite on its way to my rheumy.

Thank you for your encouragement! x

[Mean-time]

Frustrating! It's a constant guessing game! Doctors just have the advantage of medical education to add to their 'best guess' and of course experience. We must be our own advocates. I'm now trying essential oils and they really help w stress n pain w the frequent flare ups and taking 10mg prednisone a day. Good talking to you, take care.

[whisperit in reply to Mean-time]

Thanks, meantime. I think I will be upping my preds too. A bit disheartening to go "backwards" like that but as you say we can only do our best guessing. Hope you find your oils helpful x

[Footygirl]

Sorry to hear you at a low ebb whisperit but cheered your perseverance has paid off so far. Tough, tough tough this road we have been given to travel. Sometimes we get a lift but I fear most of it is down to our own propulsion. I hope yours continues forward at pace and you get a swift satisfactory result. Unfortunate to be given yet another title to add to the rest, but I know how it feels to shout in the dark. Do try to stick with your sympathetic and listening GP.

I hope you have a peaceful, stress free Christmas.

Love

⚽🎅🏼🎅🏼

[whisperit in reply to Footygirl]

Thank you very much, footygirl. I do appreciate that your thoughts come from hard won experience! Hope your Xmas is peaceful, fun and - above all - HEALTHY!!!!

Mike x

[fayeno1]

I was rushed into hospital with suspected heart attack on blue lights.Crash team waiting inserted stent where i was told it was pericarditis. Later i saw the rheumy and was told it was pericarditis caused through wear and tear.

[whisperit in reply to fayeno1]

my word, that must have been a frightening experience. I hope you are feeling a whole lot better now x

[fayeno1 in reply to fayeno1]

I now have angina, Gout. Raynauds, Episcleritis. Myalgia, Trigger finger all caused through wear and tear. While they were taking me out of the ambulance the paramedic did say that he saved my life three times on the way to the hospital. The pain in the centre of your chest is horrendous and my clothes were soaking with sweat

[whisperit in reply to fayeno1]

Yes, chest pain is frightening - there's a a special quality to it that makes even the calmest person feel scared. I've been in on a blue light twice in the last couple of years - the first time was when I was recovering from multiple fractures and I got crushing central chest and breathlessness. Nothing sinister was found, but looking back on it, I suspect this was actually the first symptom of what became my current auto-immune problem.

It's a rocky road, for sure. x

[fayeno1]

What i just cant understand it seems that most of my ailments point to RA but my blood are normal. I was also rushed into hospital when my gall bladder stopped working i was yellow. they removed the gallbladder and cut my pancreas so i was in hospital for six weeks on morphine.