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.

This is a good suggestion but don’t buy one that’s attached to the wrist as the readings are useless as they are not accurate

The information is on the internet.

My hospital doesnt charge for patient notes but it does take around 6 weeks.
They send scan copies by email but theruy are incredibly poor quality (blurred).
I know this as I put in a formal complaint re a Consultant in a different Dept
(it turns out my foot is broken after all).

It would be useful to have a copy of Ds MRI so we can see / ask about the 'changes to the ventricle'. (This might explain why he is still having pain?)
If local hospital won't play ball then might have to go private.
If a 2nd Consultant says; 'all fine' then it might just - possibly - be a very long recovery. It would be useful to know so that he can plan his studies Sept on.

I'm no cardiologist but do know a bit about inflammation markers and cholesterol ranges. Those CRP and ESR levels are indeed low and reassuring compared to the high CRP when he was acutely ill.

The LDL is high and ratio of HDL to total does not look in a good range if those numbers have been transmitted to you correctly. However, LDL can raise acutely after illness so it is understandable that they may wish to retest in a few months to see if things have improved.
That said, given your exH history, it sounds like it would make sense to screen for familial hyperc, you could try the helplines for the main heart charities perhaps about this? e.g. this helpline may help you? https://www.bhf.org.uk/informationsupport/support/genetic-information-service
Also, have any of his bloods tested his folate levels? You mention he is autistic, I don't know if he has a limited diet but ime it is not unusual for autism to go along with a more limited food choice. Good folate is important for heart health so if he is someone who doesn't eat a lot of greens for instance, I'd ask about folate bloods at the text blood tests.

Sorry, replied and it didn’t upload. One problem with the emergency room is that if he has a problem but it is under the cut off (e.g. there is still troponin, but it is under 14) is that he may not be admitted for further investigation. I don’t know the situation in a uk hospital, so can’t advise either way.

Finding a specialist cardiologist or/and a research trial may be the best bet for getting answers. With ongoing pain I hope he can rest as much as possible.

I don't expect anyone is still reading this but to update in appreciation of support:

We saw Consultant for 2nd round of tests mid Aug which were negative for Myo.
Saw him again for the routine appt 3 days ago. He says Myo is over. Ds asked why do I still feel so ill then? He shrugged & said: 'scarring on left ventricle?'.
We asked to see it on the MRI but he said: 'there's 50m of scan pics here I don't have time to go through them all (!) Don't worry, its quite subtle, quite minor'.
Ds is to stay on the Betablocker but will stop the Dapafligozin. See in 12 wks.
Re him moving away for Uni. Consultant says he is more likely to get it again than the average person. His vaccinations need updating, he's still absolutely exhausted. He's decided to go back & do a course at the local College. He's already done 50% of it so it will be a very light timetable but will give him something to focus on & keep his brain working. It's 5m from the (pretty poor tbh) hospital. He felt reassured by Consultant (myself less so), but I want him to relax & look forward. I suspect the exhaustion is only post viral but if he is not feeling better nearer Christmas / OR anything shows on the mobile heart monitor he is to wear for 2 days next week then I will take him to the Spire.

That doesn’t seem very satisfactory does it. Wait to see what the monitor shows next week, but be prepared to be the squeaky wheel that gets the oil.

Oh I'm sorry that your son still isn't really feeling better. He's lucky that he has a mum fighting his corner though!

Patient not a doctor:

Med side effects could be making him feel rough.

Trauma/PTSD is a possible factor.

Some level of inflammation remaining?

Check there isn’t also an autoimmune reaction. Rheumatoid factor and ANA.

Check all the easy to fix things - iron, Vit D, etc.

I'm following. Nothing worse than an ill or vulnerable child and, as I have learnt, the worry does not go away just because they are approaching adulthood. Despite long Covid many people are still unaware of the significant impact of post-viral illness. Thinking of you both.

Took my DN two years to feel anywhere near normal after similar. I do agree it’s important he tries to relax, keep his mind active & look forward. Too much dwelling on how he’s feeling, monitoring symptoms etc can be counter productive.

It could easily take him a year to recover. Consultants are not very realistic about recovery time because they’re dealing with the acute phase.

I assume he has seen a neurologist?

It would do no harm to see a chiropractor. It is surprising how very good they are. They certainly helped me with my GBS/CIDP.

It is also surprising that they cleared my airway when my nose was completely blocked. When I lay on the couch he put my head in alignment, pulled it, then set it back on my neck and immediately the nasal passages were clear. Although I went regularly, I never knew they could do things like that.

It may be expensive, according to where you are, but it could be of great benefit to your ds because it doesn't involve scary machinery, though they do use X-ray sometimes.

After my myocarditis in Jan (also 'subtle', rescan recently showed a very small scar which can only be seen on MRI) I felt terrible until I stopped taking betablockers. These were causing shortness of breath and general feeling of malaise and exhaustion. A few days after coming off them I felt fine. I was put on them as a precaution when they initially thought I may have had a heart attack, then taken off as soon as mc was diagnosed.

Could you maybe double check that he needs to be on them? As my cardiologist explained it, they are more for MI/arythmia than for mc

Good point. I have low blood pressure naturally and I cannot take beta blockers, they make me feel like I’m going to faint.

The 7 Things to Know About Beta Blockers: Side Effects and All - GoodRx

Info here about the possible side effects

@OldieButBaddie I wondered why he's on them still. Ds asked if he could stop meds & Consultant quizzical: agreed to drop Dapagliflozin but said (last week) to stay on Betablockers until next review in Nov. Odd as Ds' BP is slightly low rather than high, (although he was tachycardic in hospital). He also said that Myo can only definitely be dx via biopsy. I still wonder if Ds didn't (also?) have some sort of 'heart event' during the very violent D&V he had. I'll never know so not I've mentioned to him but I still think Consultant is thinking 'wait & see' & told Ds the Myo is likely to come back which wasn't very helpful of him.
Ds to wear a 48 hour mobile 'tape' this week. He has mentioned chest pain less in the last few days. Hes very bored, and very lonely as he's already had his 'gap' (ill health) year. He went into day 1 of a College course today (very light, only 6 hrs a week plus study). He wasn't keen - it's not much of a challenge as he already has similar qual at same level & others 2 years younger so I don't know if it will be right

If you're able, after the heart tape, I'd book him into spire anyway. The consultants you've seen so far sound awful and so blasé about the situation.
I hope your DS starts feeling much better very soon.

I would be seeking a second opinion tbh. If you can afford to get this privately that would be good as it would happen quickly.

Apart from anything else private doctors tend to have more time and be a bit nicer. You sometimes just need someone you can talk to you about the situation as much as anything.

Perhaps it might help to just let him relax a while? A relaxation from all the visits and tests might give you a chance to see how he is.

It cannot be easy for either of you. You must be exhausted. The consultant has made tests and is giving him medication which he considers your ds needs. Give that a bit more time. If it turns out to be wrong, or that ds reacts from his medication, then you will have a clearer picture of what the problem is, and it will be their fault, not yours.

I know it sounds frustrating, but it might be easier on ds if you do nothing until you see the consultant again.

Sometimes the stress of being taken from one doctor to another can cause more problems. You desperately want to know what is wrong with your ds, and that is natural, but he is too young to know what is going on, and he might get worse if he has to go to yet another new doctor.

@llizzie I have only taken Ds to the appts the NHS Consultant has advised. So: initial A&E (& 1 return due to chest pain as instructed), the repeat tests, a follow up & a tape monitoring to come. Ds is living his life as normal but has returned to a local College rather than moving away for Uni as planned (this is because he is still having left chest pain & left arm pain & wouldn't seek help by himself as his Autism makes it hard to advocate for himself)
I'm not interested in 'who's fault' it is/n't just that Ds gets any correct medical support & that it is explained to him/me. That enables him to process it & reduces any anxiety. It makes sense.
As I said, (unless the tape shows much) I'm going to give it some time. If he is still being troubled by chest pain then I'll seek a second opinion.

You are wise to say you will give it some time. Don't think I do not know what you are going through. I have been disabled a very long time.

Is he on Atenolol? I had that for years. During the lockdown my chemist ran out of them, and my pulse his 129. The feeling is horrid and it was immediately sent. Then about 12 months ago my doctor took me off it, and I have had no tachycardia. That surprised me as I expected to have the tachycardia, but I didn't. My GP did an ECG before he took me off them. I am on Lercanidipine and Lisinopril as well as the Atenolol.

I do hope you and your ds can finally find a solution.

@medianewbie best wishes.
Has he had the blood tests to see if there is an autoimmune reaction involved? If so low dose steroids are typically prescribed.
colchicine was a game changer for my ongoing symptoms.

patient not a doctor.

Colchicine is for gout. It is interesting. I didn't know it was given for other conditions.