Ds, 19, what are these symptoms??

[medianewbie]

Violent vomiting for hours overnight so thought just bad dose of D&V. But very sore chest. Sore neck (glands like 2 hardboiled eggs). No temp but shivery.
Pale, clammy, massive headache not resolving with ibuprofen / paracetamol. Any ideas what it might be (covid?)
We are due on hols in 12 days (1st flight ever) & would really like him well.

Ps on the tracker point - I have an Oura ring. If you’ve tracked for a while while healthy it’s very obvious there’s something wrong during and post virus. My lowest heart rate during sleep doesn’t drop below 70 for a while and then remains in the 60s - it’s usually low 50s. This remains and gradually improves over 6-9 months afterwards. My HRV is also often average below 10. It’s usually average 30ish.

I’m sorry Covid is causing you such problems each time you catch it. It does seem to be a vascular disease as much as a respiratory one. I think you’re right about this being an unacknowledged cost to the public.

Are you able to wear a mask when you’re out in public indoor spaces? I have a vascular issue that means I need to avoid getting it if possible so I wear an FFP3 mask (3M Aura) whenever I’m around people. It’s stopped me getting Covid so far. I know not everyone is able to do this though - I’m lucky to be able to work from home.

I hope you manage to avoid getting it again. 🙂

Bloods results back (via Receptionist call, had to push hard to get figures):

CRP 1, ESR 3 = 'normal' (apparently)

Fasting cholesterol = 6.5
(HDL = 1, LDL = 4.7, ratio = also 6.5). (good locum) GP has contacted Cardiologist & is waiting on reply.

I also discover that exH's bloods from 2916 show such high cholesterol levels that he should have been tested for familial hypercholesterolaemia. He's been on statins ever since. I remember asking about FH at the time (a friends Dh had it & both sons were tested age 10 & 12). I remember being brushed off. Crap GP strikes again (plus exH too).

2916 ... 🙎‍♀️

Hi op what a journey you have been on.
It shows how patchy care can be and how very medical person seems to have different thoughts than the next.
I hope your son is feeling better.

There's a NICE guideline on familial hypercholesterolaemia, if you need something official to wave at the GP.

We saw Ds Cardiac Consultant today for discharge.
He did bloods, an ect & an echocardiogram so that was thorough.
Didn't show us or explain them or the previous MRI but 'all are normal'.
So we asked why Ds still exhausted & getting central chest pain & left arm pain on a daily basis. Dr said: 'you were seriously ill, it just takes some people longer to recover. Plus you are probably focussing on it & worrying too much. It's important you get on with your life & don't sit around worrying like this'.
I expalined that Ds is getting pain at rest which worsens when he is active or it is hot & needs 6 hours sleep after 1 hour 'out and about'. but Consultant just said: 'I am not worried'. He tapped Ds chest, asked if it hurt & said he isn't worried.
Ds is to have a 48 hr 'tape' (sometime in the next 2/3 weeks?) & to stay on his current meds for an indefinate period .I asked about flu jabs & he said to arrange with GP. I asked about Ds high cholesterol & he said 'not interested in looking at that atm as that might confuse things. Am prepared to consider it in a further 6m if a further high test. Young people don't have heart attacks anyway'.
The whole consultation lasted less than 10 mins.So, that is that. He says if Ds doesn't feel 'up to Uni' in 3 weeks he will write a letter (which was helpful) but there is no more advice to be had. Ds isn't reassured & feels very 'down' I think.

I'm not surprised - I wouldn't be reassured by that either. Sorry you had yet another terrible doc.

I can't believe yet another doctor has told you young people don't have heart attacks! That alone would make me very mistrustful of his judgement op. A ten year old brother of my school friend back in the seventies died of a heart attack. I have never forgotten him or the way his entire family never recovered from the shock.

I think you are going to need to push for a second opinion. It all just seems so dismissive. There are young males who have had heart issues after the covid vaccine, that's documented.

I agree

Has anyone suggested Guillain Barre Syndrome or CIDP?

So sorry @medianewbie Writing this as someone who had had myocarditis.

Is it possible to seek a second opinion from a consultant who specializes in myocarditis. There are not many, but I found one (not in the UK). Can DM details if you want.

I was ‘cleared’ at three months based off an echo, but still had chest pain and exhaustion. A follow up MRI found inflammation remained.

Look into testing for an autoimmune reaction. I had this post-MRNA but apparently others had it after Covid. Was treated with steroids. It is a blood test initially for rheumatoid factor and ANA.

@llizzie @HellsBells67
You can't realky get a 2nd opinion in this hospital. (I'm still in this process with another dept for myself sadly).
Both GP and 1st Consultant have to agree (extra costs referring outwith area). I'm in Scotland. No Pals. There's a 'pass' system which refers you to local CAB. It's a closed loop. Local MP is a Tory, not known for helpfulness.

@Hello1234456 thank you x
I had thought, next time he has chest pain, to take him to a bigger A&E. But I assume they would just do bloods, ECG, possibly an Echocardiogram.
All of which have just checked out as okay. I don't want him to go through any unnecessary extra stress. Current Consultant clearly thinks he's cured & any chest pain / tiredness is just anxiety/overcautiousness. But it's real. If it's not caused by his heart then it's either a long road to health (& he could poss do with some counselling/ anti anxiety meds to support him on way & heart meds are to continue indefinitely) or its something else masking as heart (history of GERD in family). I'm going to ask good locum GP to give us an appt to ask about all this whilst I work out whether to 'go private' (& where to go, we are rural Scotland, I'm disabled & have a 2nd YP with Autism & SN).

Not sure exactly where you are but our local CAB can refer cases to PASS and one of their advisers takes it over from CAB but can meet you at CAB premises if that suits you better.

Oh your poor son, how very frustrating all of this is!
I hope he starts to feel much better soon.

Remember I linked above Vista health where you can get private MRIs relatively cheaply? You’d need the funds for the scan but you can get them in Edinburgh and Glasgow. If they find anything you your GP will have no choice but to re-refer you.

@Mirabai I do remember your helpful link. Thank you (then & now). I just wonder at the stress of another MRI (he hated it) when the first one was 'normal'. Although they did say there were 'minor changes to the ventricle' & my experience in another dept was one Consultant told me my foot scan was normal (but didn't show me it) but a 2nd one (chosen by the 1st!) did & there was a piece of broken bone.
I'm having to trust them atm or I'd go crackers but Ds is not reassured at all about still being symptomatic & that's what matters (as if it is 'just stress' then effective reassurance would be in everyone's best interests, surely?)

It's very helpful to keep thinking things through in this thread & I'm appreciative that folk are still replying.

I think you need a second opinion on the ventricle changes, and unlike NHS scans to which you have no access, you can keep private scan images so you can show them to whoever.

If a second scan comes back normal that would be super reassuring.

I don’t know about the Scottish ones but Vista in London there’s a special facility for people who are claustrophobic - it’s a bigger more open scan - would that help?

Otherwise I think I would just find a cardiologist specialising in myocarditis in Edinburgh and pay to see them. It would be cheaper than a scan. Although they would probably want their own.

@medianewbie
So sorry you're having ongoing issues with the medics. I had this too with post-Covid heart issues, but live close to Edinburgh. Check out the Spire website for cardiology - they list the consultants that work at their Murrayfield and Shawfair hospitals, their specialities and the cost of an initial consultation (varies per consultant). Shawfair is easy for Borders bus/train connections.

I found a fantastic consultant, who saved a lot of time by checking out all my NHS scans/tests before my appointment, and transferred me over to his list after a second appointment. His treatment has been first class and totally different from my initial NHS consultant, whose knowledge clearly didn't extend to the speciality I needed. Under him, I was feeling increasingly unwell. It was like night and day. Took a lot of persuading by other senior NHS doctors (!) to make me go, but I'm so glad I did. It took some time, but I'm now meds-free and leading life fully again. DM me if you'd like.

you can request all imaging from the nhs.
it takes a while though.
we had to fill i many forms and pay 50£ 'donation'. then take our own blank dvd and radiology downloaded all imaging for us.
was 10 years ago

oh and private radiology review cost us about a grand.

You can buy blood pressure machines to take his BP at home regularly. They are not expensive.

Under GDPR they are now not allowed to charge patients to receive their medical records unless they are deemed to be repeated or frivolous applications for updated records (so asking for the entire records multiple times instead of asking for episodic records giving specific specialities and dates for enquiry). Most trusts will send records either electronically using a service like Egress or by sending them out on a disc with password protection sent separately.