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30 yro female awaiting diagnosis

Hi sorry unsure if right place but can’t find anywhere online when looking for awaiting diagnosis of heart issues etc. Sorry for any typos on my iPhone, I have just turned 30 few months ago since 2015 I have had very abnormal ECGS in and out hospital with what I call them as episodes as have not been close until recently knowing what’s going on. In 2015 was rushed in with chest pain had a high D-Dimer and my ECG showed multiple t wave inversions and ST depression, at the time they thought I was having a heart attack/PE after 5 days in hospital for then getting treated for a PE after scans etc it turned out I didn’t have a clot and this was what they now call my normal ECG so ever since then my ECGs all show this as the cardiologist says it looks like on paper that I’m having a heart attack or looks like a PE. I have had countless echos Tapes etc. It wasn’t until I moved back home with my fiancé closer to family at the start of the first lockdown my care got moved to new local hospital and I got my care transferred to a brilliant cardiologist consultant who has been nothing short of amazing and he says my ECGS are not normal which they have always said to me but in past I was just told when you have an episode just come to hospital which isn’t ideal but this consultant wants to get to the bottom of what’s going on I do have heart issues in my family so they have been looking down all routes. Plus it’s no way to live and it’s quite scary I have just had another echo done had a few before my last one two years ago showed mild regurgitation I don’t know what that means🙈 my recent one still not had results just had another tape put on this time I have it for one month I have had about ten of these now. I am also awaiting an mri and I recently done a stress test which he wasn’t 100% happy with, I have been told by him I cannot exercise at the moment and can only walk really and not anything to uphill. My only current symptoms is I have massive flutters like when you go over a hill and tightness and arm pain this comes and goes and has done for the last several years. Cardiology nurse at my last hospital said they think I could have had a silent cardiac event that’s left my ECG this way but that makes no sense to me and I’m not medically educated to even know if that’s possible. I know that they have always mentioned they think it’s the “ plumbing” side with the issue but I know the tapes pick up the electrical side, They have not picked up any abnormal or worrying arrhythmias which he said is good but the inversions and so on they are not happy with, I also have st segment changes that don’t progress during my stress test. I’m hoping I’m close to a diagnosis they mentioned a type of cardiomyopathy I think that’s what it’s called I could be completely wrong. I am just looking for some advice or a hand hold as I am feeling very unfit especially now I cannot exercise I know I can eat better but has anyone got any tips on what else I can do to stay healthy and feel healthier as exercise was great for my mental health & I have put on weight during lockdown which can’t be helping and I have an eating disorder binge eating which is also a trigger with the anxiety of all this going on. Sorry this was a long post and I hope everyone is well and taking care. Sorry again if none of the above make sense I just pick up certain things at my appointments.

Thank you

Take care 💜❤️

  1. Hi. Thank you for your post and inquiry. It is not too long, and we are not picky about typos, so you are fine there. Sorry you are having to deal with heart issues. I can completely empathize with you on how stressful it must be going through all of this, especially since your doctors (and brilliant cardiologist) are having a hard time finding your proper diagnosis. It sounds like they are running all of the proper tests for someone in your situation. I am certain your cardiologist will figure things out and find out exactly what is wrong with you -- and then to find treatment options that will work best for you. The hard part, as you note, is the waiting and what to do while you wait. Have you talked to your doctor about what you can do to keep up your mental health besides exercising? John. heart-failure.net community moderator

    1. Hi I’m so sorry for the late reply and also wide awake club I had two assignments due lucky me so been non stop all week 😀 Yes I have appointment with GP on Tuesday so going to speak through then , the consultants secretary called today said I have appointment sent out to have a chat and see where we are going next from here. My consultant has just retired so sad as he’s such a great man and my care has been past to another but I’m sure they will be equally great. It’s just scary even though I wasn’t a gym fanatic to be told not to do anything bar walk and not to uphill, I ask is it case I drop dead 😀 I have a dark humour if I don’t laugh I will cry. Thank you so much for your message I really appreciate it and the information on the website is really helpful. I hope you are well yourself and have a great safe weekend.


      Take care 😊

      1. Thank you for the update. Glad to hear you found the articles helpful. And, yes, I am doing well myself. And no problem with the late reply. That sometimes happens in this busy world we live in. Glad to hear you have an appointment coming up with your GP. It will be neat hearing from you what you learn from this appointment -- if you don't mind giving us an update afterwords that is. Wishing you all the best. John. heart-failure.net community moderator

        1. Hi again hope your Monday is going well 😀 my appointment is tomorrow and I also had a call from cardiologist secretary saying I have an appointment sent out so will be seeing him soon to go over echo results and event monitor and to see next steps. I phoned my GP earlier today regarding results from a different department and they by chance said they had a letter from my consultant updating my GP and their was some abnormalities on my echo I can’t remember all of what they said but the two things I remember they said theirs no significant valve disease so I was wondering if that meant I have minor & also I have borderline changes and an increase in atrial pressure. I have no clue what any these things mean but I have my GP at least tomorrow. Hope you had a good weekend and thank you again for your reply.


          Take care

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