heart

[Danabrod]

Hi i am 30 years old and as of 8 months ago was what i thought was health,never did drugs,smoked or drank,I eat healthy. But around 8 months ago I started having chest pain,heavy tingling left arm,couldnt even go down a flight of stairs without stopping and resting.So i went to a well know cardiologist and after a echocardiogram was done Dr. told me that i have cardiomyopathy with an ejection fraction of 35%  and some other heart condions such as global hypokineses,a dilated left atrium,mitral regurgitation, I was then told months later to go to a hospital for a pace maker, but before i had surgery the hospital did their own tests and then i was told i did not have cardiomyopathy my ejection fraction was 57.and only mild heart conditions but nothing to worry about.But they had me do heart therapy for 6 months and kept me on beta blockers for the rest of my life.my symptoms are only getting worse it seems. So my questions are..how can echos be that wrong? has anyone else had this problem? should i go get a third opinion or just listen to hospital cause i cant afford anymore bills. And if hospital says there is nothing wrong why would they put me on heart therapy and keep me on heart meds.so confused  any answers will help.thank you

[Danabrod]

Ok just got back from another doc appointment, now this one saying I do have cardiomyopathy. I have been to four specialist and  two says I do and two say no. ej supposidly went from 30 to 57 to 45 and now 30 and told me bot to have children,all within a year.

[Danabrod]

Ok just got vack from abotherdoc appointment, now this one saying I do have cardiomyopathy. I have been to four specialist and four  2 says I do and two say no. ej supposidly went from 30 to 57 to 45 and no 30 and told me bot to have cchilren,all within a year.

[Mom2four85]

you have a family history of SCD at a very young age; do they have any clue what happened or find the cause? enlarged heart (cardiomegaly) or any type of genetic disease after your father passed away?

sometimes with CM does come and go and will get better but you need to find out what is causing it; I've talked to many CM and HCM patients in the past 2 years...no 2 patients suffer the same and none are exactly alike - we all have similar stories of misdiagnosing and going through heck to find answers - very few get a diagnosis quickly because CM/HCM is "quirky" for lack of a better word

don't give up no matter what anyone says...but if you want a referral check the www.4hcm.org website - they have a list of doctor's who are very familiar with cardiomyopathy and may give you the answers you deserve.

[tom_h]

My car's making a funny noise.  I take it to my dealer and he tells me I need a new transmission, $3000.  I take it to my local garage, and Goober there tells me the dealer is crazy, and it's just a little blivit that needs adjusting, $79.99  Who to trust, whoo to trust......?  When you get two opinions that are so far apart, logic would tell you that somebody is very wrong.  Am I right?  Enter, the third garage.  Go in "cold", no opinions, just "the car is making a funny noise".  That guy is probably going to tell me what one of the other two places are saying, and that's probably what's wrong with my car.

[Mom2four85]

I had this happen and started questioning about echo's.  I have questioned every doctor about this I've seen for the past 2 years and they draw a blank when I ask their protocols or what standard they go by...normally I get - that's a good question I'll have to ask my staff LOL

I started researching and found many inconsistencies and have not gotten a clear answer from any cardiologist or EP I've seen - 15 total....http://www.medhelp.org/user_journals/show/305549/One-size-fits-all?personal_page_id=861727

This is what happpened to me - My cardiologist did an echo that showed my EF was 55-60% and "normal".  I had an ablation then a cardiac cath that showed my EF was really 40%.  EP said it may have been due to "tech" error because of the skill of the tech who performed the echo then the person who read it.

I would definitely ask what protocol and standards they're using in their echo guidelines.  If you get an answer I would love to know what it is so I can research and ask about that at my next dr's appt.

I've found many dr's do not understand cardiomyopathies and you need to find a dr who does - ask for a referral from an expert in the heart disease forum here so you can rule out each CM and causes

btw what did your father die of? that could be an important clue and point to what you do have - not all patients have the exact symptoms or suffer the same so someone with a mild case of CM may have severe symptoms

[Danabrod]

Thank you sooo much jerry sounds good,I will def check that out,I will do anything at this point even if  I have to pay thousands again.thanks again                 Dana

[Jerry_NJ]

Given your additional information I think you may be able to get some affordable interpretation/diagnosis of your tests from Cleveland Clinic, for example.  I have not used it but I believe Cleveland Clinic offers some service over the web and via mail of lab work if it is on paper.  I don't know either what it cost, but I think it is more like hundreds of dollars, not thousands.  

I have a colleague who used the service to get another medical evaluation on data that one doctor used to recommend a ablation surgery.  As I recall, Cleveland Clinic suggested trying meds.  I do know he is on flecanide  and that is controlling the AFib problem.

Given your family history I think it is important that you get the best medical advice possible... and I believe Cleveland Clinic is one of the top heart hospitals in the world.  I have never used them myself.

[Danabrod]

Hi thanks for your comment I do have all the paper work showing that I have cardiomyopathy,i wouldnt worry about it as much if my symptom were not so bad,and my father died of similer diesese at 35,i am just fed up with health care and hate paying thousands of dollars and still dont know,and how it could be so wrong,my bp is either high or low 160/98 and within 30 minutes it will go down to 98/55  my pulse is also crazy 120bpm when waking and at times 200bpm but im on meds for that but lately it goes all the way down to 47 bpm,but did u go to doc for your heart?have u ever been diagnosed?

[justanumber]

i am 30 also and my heart is in bad shape because i eat junk,drink too much pepsi and i do not exercise. it is possible to have heart trouble at 30. do you have copies of the echo done by the doctor that said you had a low ejection fraction? if you eat healthy and exercise,i think your heart should be fine at age 30. do you know your baseline blood pressure and resting heart rate? i would try to get medical records and if you can afford it go to another cardiologist and get a consultation.