Suspected Heart Murmur and Further Cognitve Tests

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Hi everyone again, I just thought I'd report back with another update on my health situation.

My GP gave my heartbeat a listen during an appointment and reckons that I have some kind of heart murmur, so I've now been refered to a cardiologist. My heart has been doing all kinds of crazy abnormal beats and arrhythmias (scary sudden SVT attacks, PVCs, bigeminy episodes, heart quickly alternating between normal beats and bigeminy etc) for over 4 years, becoming progressively more frequent and erratic over the years so I'm glad that a doctor has found something abnormal, just by chance with basic examination too. The doctor wasn't as concerned as I felt he should have been though about all the strange flip-flopping my heart was doing during the appointment, but did seem genuinely worried about the other noises my heart was making aside from the strange beats. In 5 and a half years with my mystery "Donnington Disease" condition that no one seems to have any answers to, this is probably the first time something abnormal has been found related to my illness I would say, besides a 2-hour SVT attack I was having where I eventually called an ambulance. If I do have actual issues with my heart, rather than my inflamed brain causing it to malfunction, it may explain why I'm getting weaker and out of breath so easily as my condition progresses.

Besides this, I'm also getting a second cognitive testing battery done. The first testing battery at least helps establish some kind of baseline before I deteriorated even further. So If I score worse on these tests than I did previously, this would help document my cognitive decline and show that it's an objective problem.

At the moment, I'm also pushing to get a PET scan of my brain done. In the UK, there's a clinic in Nottingham (I live in Glasgow) that apparently does them without a referral but still has it's own consultants to decide if I should get the proceedure. As far as I know too, they are mostly used in the UK to diagnose cancer and almost never hear of brain scans being done with them other than for research purposes. I really hope this year I figure out a way to get a PET brain scan, as there's an almost guarantee abnormalities will be found on it, and I reckon my brain issues are autoimmune-related too given the continuous state of decline with symptoms and loss of functioning.
 

livinglighter

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Thanks for the update @SeanQHX1

I'm keen to hear if you can get the PET scan carried out here. My family is now keen on having brain testing carried out due to my cognitive deterioration and physical functional decline, so it will be good to know if there is somewhere in the UK where it can be performed. I'm also looking into finding a suitable UK testing facility, so I'll update this thread if I find it somewhere.

Will you also consider travelling if you aren't successful finding anywhere UK based?
 

Sushi

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My GP gave my heartbeat a listen during an appointment and reckons that I have some kind of heart murmur, so I've now been refered to a cardiologist.
I feel for you! As someone who also has arrhythmias that have caused me a lot of grief, I have found that an electrophysiologist is at least 100% better at dealing with these problems than a general cardiologist. I wasted several years seeing an excellent general cardiologist who pretty much missed the key issues. Arrhythmias are incredibly unsettling! I also ended up in the emergency room. The good news is that an electrophysiologist should have effective ways of treating them.

I am in the US where I could self-refer, but from what I hear, in the UK you might have to push to get referred to an electrophysiologist. Good luck—I know how unnerving it can be to have ‘unrest’ in your chest!