Heart Rhythm Conditions – Welcome to the group

I'm guessing this topic has come up in the past, but I didn't find it (yet) in my searching, so I hope it's ok that I'm posting this question.

I started having palpitations (and associated mild light-headedness, weakness) in late December. I work with an ENT doctor who wanted me to go to the ER, just to be safe. Everything came back normal there (EKG, bloodwork, 2 day holter monitor). Then I met with my provider (NP), who ordered an echocardiogram and stress test, both of which came back normal. Because the symptoms persisted and actually became more frequent, I asked my provider if she would refer me to a cardiologist, and she did. However, the cardiologists reviewed my file and, through my provider, said they would not see me, as I'm just having 'benign palpitations'. Working in the health field (at this same small hospital/clinic), I'm just blown away that they won't even see me. So, my question is whether I should look further (i.e., different/larger medical facility, which, of course, won't be covered nearly as well by my insurance), as I don't want to overlook something serious (I have a 3-year-old little girl who needs her Mom), or should I just assume these cardiologists are right, and, since all of the major tests came back normal, just not worry -- just a 'benign' symptom. ?? Curious what you all would suggest/do in my shoes?... Thanks, in advance!

Only treatment is Blood Thinners and as i have had different clots in different parts of my body it will be for life now. :/

Hello Tim @bjork579

I'd like to add my welcome and thank you for joining this group on Connect. I thought you might also wish to view some of the conversations taking place in these discussions about Transplants:

– Transplant stories that inspire: What's yours?https://connect.mayoclinic.org/discussion/patient-stories/
– Heart transplant https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

@skymya I appreciate the information. Is there a treatment for APLS?

Teresa

Sure.. Its usually only diagnosed after an issue has happened such as a blood clot. They do a blood draw and check for 3 different things, anticardiolipin, beta-2 glycoprotein I (β2GPI), and lupus anticoagulant. I came back neg on the lupus but have both of the others. Then a 12 weeks wait or so and repeat the test again because some blood thinners and heart attack meds can give a false positive after a major event such as I unfortunately had. Yesterday was my second positive test results.
I also cant follow my own INR at home due to error reading caused by the APLS proteins.

If I had followed up with a doctor after i had blood clots 3 days after giving birth 17 years ago with preeclampsia, both warning signs of APLS, I might have been diagnosed earlier.

@skymya I appreciate your sharing your most recent diagnosis of APLS. I would be interested in hearing more about that. Could you explain how that was diagnosed?

Teresa

It was postponed due to the doctor not being available.
It was confirmed yesterday that i do have primary APLS and that I dont have lupus.
I also have bilateral footdrop that is finally almost gone after months of PT and have been walking unaided for 3 months now with just a few issues with balance.
I have been having a bit of side pain. So am afraid my kidneys might be having issues again and don't wish to go back on dialysis again if i can avoid it. My last dialysis catheter developed multi clots in my jugular. :/
Its been a lot this last year that's for sure but am doing great.

@babs2519 Hello Barbara:

I see this is just your second post on Connect. Welcome! I so appreciate your post - you and your husband have a delightful sense of humor. When you said, "It's nice to know there are other people out there with experience with our health issues," you stated one of the most important purposes of Connect. As we all share our experiences, we learn from each other and don't feel so all alone in our situation.

I am Teresa, a volunteer mentor on Connect. I too have some heart problems, including aortic insufficiency, LBBB, diastolic dysfunction and some rapid heart beats that come and go.

If you care to share, when was your husband's valve replacement? Has he done well since that procedure?

I look forward to hearing more from you in the future.

Teresa

Hi, My name is Barbara. I will be 79 tomorrow and I have had heart palpitations, which are under control. My husband Adrian is 95, has had a valve replacement, and has a fib. He has no pain or discomfort, but "I can't run down the street like I used to."
It's nice to know there are other people out there with experience with our health issues.

Thanks much. I look forward to participating.