joshrandall Posted January 26, 2016 Report Share Posted January 26, 2016 I think I may have posted this before but I had an echo and they said that I had some slight leakage but that everybody has leakage, but I find I get on the left side of chest a wet dripping feeling alot, and Im wondering if thats related, if so how reliable is the echo that the leakage isnt bad, or is it just based on that time, mind you, they also dont think I have pots and think 200bpm on a stress test is fine, I find I get all sorts of discomfort in my left side of chest in the heart area, but this wet feeling/cold is really weird. Quote Link to comment Share on other sites More sharing options...
angelloz Posted January 26, 2016 Report Share Posted January 26, 2016 If you still have questions and concerns you might think about a second opinion with another cardiologist. No fun I know! Hope you are having a better day. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 3, 2016 Author Report Share Posted February 3, 2016 If you still have questions and concerns you might think about a second opinion with another cardiologist. No fun I know! Hope you are having a better day. it is really difficult to get that here, they have pretty much dismissed me now as fine, i did have an echo and was informally told i had slight leakage, but as i say what is this burning wet feeling always on the left side of chest? what could it be related to but that? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 3, 2016 Report Share Posted February 3, 2016 Josh,Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there! Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 4, 2016 Author Report Share Posted February 4, 2016 Josh,Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there!I had an event monitor it showed ectopic beats, what Im kind of worried about is wether this is to do with the valve leakage, I had an echo done and they said I had slight leakage, this is just really weird wet feeling and its always near the heart, it also burns sometimes. :/ Im not actually under a cardiologist now they pretty much discharged me because everything was normal this was a few months ago now though and Im wondering if it is progressing, obviously a lot of pots symptoms overlap with leaky valve, and I cant get them to recognize that I have pots either :/They pretty much discharged me so i have to go back to gp now. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 4, 2016 Report Share Posted February 4, 2016 Josh,I do have mild regurgitation from 2 of my valves that each have mild prolapse (which is common for EDS patients). I do not experience any symptoms related to this. My understanding is that there are "levels" or "grades" of severity of this leakage/regurgitation. Mine is very mild and my cardio has said it's nothing to be concerned about. Because I do have EDS, we do an echo annually to check everything out, especially my aortic root. I think I would ask the doc to explain what the relative severity of your leakage is so you can have some peace of mind and have an understanding of whether this is an issue that needs to be monitored going forward. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 4, 2016 Author Report Share Posted February 4, 2016 Josh,I do have mild regurgitation from 2 of my valves that each have mild prolapse (which is common for EDS patients). I do not experience any symptoms related to this. My understanding is that there are "levels" or "grades" of severity of this leakage/regurgitation. Mine is very mild and my cardio has said it's nothing to be concerned about. Because I do have EDS, we do an echo annually to check everything out, especially my aortic root.I think I would ask the doc to explain what the relative severity of your leakage is so you can have some peace of mind and have an understanding of whether this is an issue that needs to be monitored going forward.hey thanks for reply kb, the impression i got was its nothing to be worried about everyone has some was what she said, they didnt put it in the report, can this progress or perhaps been caught at a time it isnt as bad im wondering? im not sure i can talk to the cardio still as they have dismissed me now? Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 4, 2016 Report Share Posted February 4, 2016 My understanding is that it may or may not progress and that usually progression would have some cause, like EDS. I can't say for sure but I don't get the impression it is an issue that waxes and wanes so that they may not see the severity. I think it is the kind of thing that exists and may get worse over time but it's not on and off. I can't remember if you are in the US or the UK. I know here in the US, it would be acceptable to call a doc for clarification even if they have discharged you. I don't know if it would be different in the UK because it is a socialized system. For what it's worth, my doc said the same thing...that most people have some small amount of leakage that they never even know about because most never have a need for an echo. She told me that mine, because it is mild, would be considered an incidental finding. If I didn't need an echo to check my aortic root for enlargement due to my EDS diagnosis, she wouldn't order a yearly echo just for this level of regurgitation. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 4, 2016 Author Report Share Posted February 4, 2016 My understanding is that it may or may not progress and that usually progression would have some cause, like EDS. I can't say for sure but I don't get the impression it is an issue that waxes and wanes so that they may not see the severity. I think it is the kind of thing that exists and may get worse over time but it's not on and off.I can't remember if you are in the US or the UK. I know here in the US, it would be acceptable to call a doc for clarification even if they have discharged you. I don't know if it would be different in the UK because it is a socialized system.For what it's worth, my doc said the same thing...that most people have some small amount of leakage that they never even know about because most never have a need for an echo. She told me that mine, because it is mild, would be considered an incidental finding. If I didn't need an echo to check my aortic root for enlargement due to my EDS diagnosis, she wouldn't order a yearly echo just for this level of regurgitation.I have to say this is really worrying me im now getting a sharp twinge pain to go along with it very bad pain and i can feel it dripping and wet. Quote Link to comment Share on other sites More sharing options...
corina Posted February 4, 2016 Report Share Posted February 4, 2016 Josh, whenever you experience new symptoms or feel really uncomfortable, it's best to contact your doctor! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 4, 2016 Report Share Posted February 4, 2016 I agree with corina, if this is new, you should seek medical attention. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 5, 2016 Author Report Share Posted February 5, 2016 I need a new gp this one is terrible, im worried its pulmonary edema, or embolism, and I fear with my work up in september no ones going to take it seriously I mean my pulse is normal id guess an ecg, wouldnt show much now anyway I do feel it in my back aswell and I havent actually done anything for it to ache and the wet feeling isnt really explained, although Ive had the wet feeling for a while on and off, and I had it when I was in hospital an echo would have shown fluid right? and fluid doesnt wax and wane, I just dont know what this could be, I will go back to the doctor but I dont think he'll do anything I think he'll say "youve been checked out".I am a real worrier, for these kinds of things, but Ive never seen anyone here talk about cold wet feelings on there chest with sharp stabbing burning chest pain. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 5, 2016 Report Share Posted February 5, 2016 Hi Josh, You may want to check out some of this past thread. If you read through it, it talks about various neuropathies. http://forums.dinet.org/index.php?/topic/23213-cold-area-on-leg-like-water-spilled-on-it/?hl=%2Bcold+%2Bwet+%2Brunning Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 5, 2016 Author Report Share Posted February 5, 2016 thanks, I dont get it anywhere but right near my heart though and it comes with accompanying pain, I have never felt so scared and depressed in all my life its just like there is no help for me and Im waiting to die, Im so sick of trying to convince doctors. :'( Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 7, 2016 Report Share Posted February 7, 2016 Josh,I felt similarly when I first got sick and the docs were being supremely unhelpful. I kept th8nking, "Great! While these guys are being arrogant know it alls, I'm dying and none of them care." There even came a point when I had to take a break completely from seeing docs. It lasted for about 6 months, then I was ready to re-approach the situation. (I'm not advocating not seeing a doc if you need one.) Just know that it's normal to have these feelings when you aren't getting answers. I was much more stable emotionally once I started to get some answers because I didn't feel so out of control, and, I knew I wasn't dying. The fear of the unknown was terrible for me. We are always here to lend you support when you need us.Katie Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 7, 2016 Author Report Share Posted February 7, 2016 Josh,I felt similarly when I first got sick and the docs were being supremely unhelpful. I kept th8nking, "Great! While these guys are being arrogant know it alls, I'm dying and none of them care." There even came a point when I had to take a break completely from seeing docs. It lasted for about 6 months, then I was ready to re-approach the situation. (I'm not advocating not seeing a doc if you need one.) Just know that it's normal to have these feelings when you aren't getting answers.I was much more stable emotionally once I started to get some answers because I didn't feel so out of control, and, I knew I wasn't dying. The fear of the unknown was terrible for me.We are always here to lend you support when you need us.KatieThanks for the response katie, I think I dont handle things very well, prior to all this I did suffer panic attacks. I've had this pain about 4 days now, and now intermittently Im getting this very sharp twinge, near my heart, or on my heart I also get a sort of ache pain in my back. As well as a knotty feeling there aswell. My family who I wanted to take me to accident and emergency today, all insist I am fine and not going to die, based on the work up I had 6 months ago. So I've held out another day, I haven't blacked out but it is a general feeling of constant discomfort also with the wetness, and then twinges had about 20 today I think. I feel like an idiot going to a&e. Tired of the lack of support from family based on what doctors say, If I go to my primary care doctor, gp here. They will as they have before say, something along the lines of " You've been checked out or something and maybe book an ecg"Should I go to a&e with this or just go to my doctor? Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 7, 2016 Report Share Posted February 7, 2016 Josh,No one can make that decision for you. It's not about what others think. It's about how you are feeling about your health and safety. If you feel like you are in trouble medically, get help. Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 9, 2016 Author Report Share Posted February 9, 2016 so went to doctor yesterday and she said you wouldnt feel leakage on your chest, so its not that and that my pulse and bp were normal (sat down of course). didnt listen to my heart said to come back if it persists. so i dont know what to think really. Quote Link to comment Share on other sites More sharing options...
corina Posted February 9, 2016 Report Share Posted February 9, 2016 It might be best at this point to follow your doctor's advice josh. You have gone in, she is aware of your situation and if it persists she is willing to see you again. Hope things will calm down soon! Quote Link to comment Share on other sites More sharing options...
joshrandall Posted February 10, 2016 Author Report Share Posted February 10, 2016 It might be best at this point to follow your doctor's advice josh. You have gone in, she is aware of your situation and if it persists she is willing to see you again. Hope things will calm down soon!Yeh going to try corina, but still can't help but worry, and this pain is really uncomfortable I have to admit. Quote Link to comment Share on other sites More sharing options...
Bokos Posted August 1, 2019 Report Share Posted August 1, 2019 Did you find out what it was josh Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted August 1, 2019 Report Share Posted August 1, 2019 Leakage like regurgitation from one or more valves? Maybe it is your esophagus. Heart and stomach stuff get mixed up all the time. Idk that you'd feel leaking from valve regurgitation. Get a second opinion. Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted August 1, 2019 Report Share Posted August 1, 2019 Just now, potsiebarbie said: Leakage like regurgitation from one or more valves? Maybe it is your esophagus. Heart and stomach stuff get mixed up all the time. Idk that you'd feel leaking from valve regurgitation. Get a second opinion. Whoops sorry didnt see that this is three years old! Quote Link to comment Share on other sites More sharing options...
Outaker Posted August 1, 2019 Report Share Posted August 1, 2019 Its ok I forgive you Quote Link to comment Share on other sites More sharing options...
ChristopherHarr Posted November 2, 2019 Report Share Posted November 2, 2019 I'm feeling the exact same thing. The pain in my chest hurts like a pulmonary embolism I guess and it feels like my vessels is leaking. Quote Link to comment Share on other sites More sharing options...
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