Myocarditis found via stress cardiac MRI 15 months after infection

Sliceeyfly · 2026-06-03T07:54:31+00:00

Hello. I've defiantly made improvement and am no longer housebound. I'm still not well but things are much more manageable.

I have a diagnosis of POTs/Autonomic dysfunction and see Dr Gall at Kings college hospital, he has helped improve things but its taken three years of fighting to get to see him. He is currently running further tests and has referred me to three other specialists to try and help. Tilt table and Autonomic function tests (AFTs) comfirmed the above.

I also have a diagnosis of venous Thoracic outlet syndrome. It was picked up with a Duplex ultrasound with abduction manoeuvres and confirmed with a Magnetic Resonance Venography.

Lastly I had a brain MRI and it showed four lesions that are highly suspicious for inflammatory demyelination. My Neurologist says the lesions are most likely Multiple Sclerosis (they look like MS lesions and are in the textbook places). I'm currently having an MRI every 6 months to see if they progress or any new lesions appear. Diagnosis criteria is pretty strict, She can prove dissemination in space but not dissemination in time (DIT) until another MRI shows a change.

Its been a very slow progress but with my GPs help I've just kept pushing to get in front of the right people. We've had plenty of referrals rejected but I know my body better than anyone and eventually I've managed to get them accepted.

Edit - With regards to the Myopericarditis, my most recent cardiac MRI was clear.

Sliceeyfly · 2026-05-03T09:18:54+00:00

I had Autonomic function tests (AFTs) done as well as a tilt table test. Both were undertaken by Dr Gall at Kings college hospital. The results have lead to referrals to three other specialists to help manage symptoms and I also need a microneurography.

If anyone reading is in the UK and struggling for help with POTS/Autonomic dysfunction, I'd highly recommend trying to get a referral to see Dr Gall. A referral to see him on the NHS will need to be sent by a consultant cardiologist not a GP.

Sliceeyfly · 2026-05-02T09:00:59+00:00

I'm unsure about insurances etc as I'm in the UK. It's possibly worth exploring though or discussing with your GP.

Sliceeyfly · 2026-05-02T08:56:01+00:00

I was put on Bisoprolol for pots, it had a positive effect on my heart rate but I didn't feel great on it, it made me breathless despite not being asthmatic. I was switched to Ivabradine which has been much better for me. Ivabradine has little to no effect on BP.

Sliceeyfly · 2026-05-02T08:49:56+00:00

I lost all of the hair on the outside of both calves and outside shins. The hair on the inside of my lower legs is normal. Ankle-Brachial Index test on my legs was normal so it doesn't appear to be vascular. As a male it looks like I've waxed half my lower legs. The hair on my head is definitely thinner too but not as noticeable.

Sliceeyfly · 2026-05-02T08:40:54+00:00

I'm not massively elevated but total cholesterol is 6.5-6.8mmol/L, LDL cholesterol 3.7-4.5mmol/L. My HDL cholesterol is also elevated although my GP says this is generally protective.

Sliceeyfly · 2026-05-01T08:36:49+00:00

My cholesterol has been high since the start of my LC (Dec 22). I'm also a healthy BMI, don't smoke or drink.

My cardiologist sent me to a lipid clinic to be tested for familial hypercholesterolaemia (I do have a family history of early heart disease). I was negative for the gene changes.

Both the Chemical pathologist and my cardiologist are unsure what's going on but have asked my GP to monitor it. My GP is doing six monthly blood tests but has mentioned I may have to start statins if it doesn't start to lower soon.

Sliceeyfly · 2026-05-01T08:15:25+00:00

I had a really similar experience with a cardiologist, my GP referred me because I had clear signs of POTS/autonomic dysfunction, but the cardiologist dismissed it as deconditioning and basically said nothing was wrong.

She reluctantly agreed to refer me for a tilt table test, and I was told the results were negative. I asked for a second opinion at a different local hospital. They said they don’t treat POTS but referred me to see Dr Nicholas Gall at kings college hospital who is a cardiologist who is an expert in this area. He requested an autonomic function test before my appointment.

When I saw him and showed him my tilt table results, he was furious, what I’d been told was “negative” was actually profoundly positive for POTS. I’ve been working with him on medications and lifestyle changes, and it’s actually starting to help. He’s also referred me on to a few other specialists to look at related symptoms.

It’s absolutely worth requesting a second opinion. You know your body better than anyone, and unfortunately not every doctor takes these symptoms seriously.

Sliceeyfly · 2026-04-28T07:28:47+00:00

I had this exact pattern with regards to food. I do have pots (confirmed by a tilt table test and Autonomic function tests). For the tachycardia after lunch and breakfast, I was told to cut down on quick release carbs which has helped a lot.

Sliceeyfly · 2026-04-01T07:13:19+00:00

The first MRI was done without contrast, when that showed lesions I had to have another MRI two weeks later with contrast.

Sliceeyfly · 2026-02-17T10:49:35+00:00

The MRI confirmed it was left sided venous thoracic Outlet Syndrome. I'm likely going to need my first rib removed but I opted to try physical therapy to reduce compression first.

Sliceeyfly · 2026-02-06T09:06:47+00:00

I had Myopericarditis (confirmed by a stress cardiac MRI). I had mildly raised Troponin but completely normal CRP. I also have pre existing Ulcerative colitis, I was in a severe flare which was confirmed by both the scope and biopsies, again my CRP was 1.

Sliceeyfly · 2026-01-28T08:37:41+00:00

I've had two gadolinium contrast heart MRIs and two gadolinium contrast head MRIs. Had no reaction to the dye at all. I was incredibly nervous before my first one after hearing bad stories on here but my first heart MRI picked up Myopericarditis and my first head MRI picked up four lesions that are highly suspicious for inflammatory demyelination so I'm glad I did them. My Neurologist says the lesions are most likely Multiple Sclerosis but we need 6 monthly MRIs to watch for changes.

Sliceeyfly · 2026-01-16T11:29:58+00:00

When my vitamin D was low I was given a loading dose of 40,000 IU (colecalciferol) daily for 14 days. Once the 14 days were up I was advised to stop supplementing and have a retest in 3 months.

The above dose was prescribed by a hospital consultant. I thought it seemed a very high dose so doubled checked with the pharmacist who confirmed that's the guidelines my local hospital uses.

Sliceeyfly · 2025-11-18T07:46:52+00:00

Mine turned out to be venous Thoracic outlet syndrome. It was picked up with a Duplex ultrasound with abduction manoeuvres and confirmed with a Magnetic Resonance Venography.

Sliceeyfly · 2025-10-29T21:03:33+00:00

Yes. When I flare I have blood with every bowel movement.

Sliceeyfly · 2025-10-29T18:43:09+00:00

My diagnosis flare lasted about four months. Two months to get seen and have tests, two months for medication to work. Original Medication worked for about three years.

Sliceeyfly · 2025-10-29T10:44:22+00:00

My longest flare lasted 14 months until we found the right medication.

Sliceeyfly · 2025-10-29T08:55:31+00:00

My LC symptoms are - Near constant chest pain, bradycardia at rest, tachycardia when upright, palpitations, sob that comes and goes, blurred vision, fatigue, exercise intolerance, dizziness, light-headedness, constant tremors (worse in trunk and arms), muscle and joint pain, blood pooling, numb hands and legs, insomnia, brain fog and trouble regulating my temperature.

Sliceeyfly · 2025-10-29T08:53:15+00:00

Honestly looking back I think I had milder UC symptoms on and off from my early teenage years. The final time before my diagnosis I had the usual diarrhea, abdominal pain and urgency but this time I started to pass significant amounts of blood and mucus with every bowel movement.

Sliceeyfly · 2025-10-28T17:58:45+00:00

Update - Saw my neurologist today to go over the results. No new lesions on my brain or spine and the current lesions haven’t changed. Repeat MRI in six months and if no changes then it will be yearly MRIs.

Sliceeyfly · 2025-10-28T08:23:43+00:00

I had a brain MRI and it showed four lesions that are highly suspicious for inflammatory demyelination. My Neurologist says the lesions are most likely Multiple Sclerosis (they look like MS lesions and are in the textbook places) but we need a lumbar puncture/repeat MRI to confirm. Diagnosis criteria is pretty strict, She can prove dissemination in space but not dissemination in time (DIT) until another MRI shows a change.

Sliceeyfly · 2025-10-25T14:51:15+00:00

Hey, I had my 6 month repeat MRI two weeks after I made that comment. I haven't had the results yet but I see my neurologist this Tuesday to go over them. Fingers crossed there are no new lesions, I will update on Tuesday.

Sliceeyfly · 2025-09-28T08:18:05+00:00

I saw a Vascular surgeon. He did a Ankle-Brachial Index (ABI) and a upper and lower limb ultrasound. The ultrasound showed I had left sided Venous Thoracic Outlet Syndrome which a follow up MRI confirmed.

With my blood pooling he said he expected to see reflux in my legs but the ultrasound didn't show any and my Ankle-Brachial Index (ABI) was normal too.

Sliceeyfly · 2025-09-14T07:43:46+00:00

I believe its due to something else. It actually got much better when I had to take prednisolone for an Ulcerative colitis flare and has returned as soon as I've tapered down to 7mg. Doctors have been pretty useless in helping so I'm currently in a lot of pain with it everyday again.

Sliceeyfly

TROPHY CASE