5 cardiologist but no definite diagnosis.

Posted by kburgos @kburgos, May 17, 2024

Hello all. I'm sorry if this is long but I'm going to try and put as much information as possible.

I'm 33. I am 5'7" and weigh 104lbs. No caffeine in 13 years. Don't drink. Stopped smoking cigarettes and switched to vaping 3 years ago. I was born with dislocating knee caps, was checked for ehlers danlos but it was negative. I've been diagnosed with anxiety/panic disorder, bi-polar type II, and ptsd.

I have recently had: An mri of my brain which came back fine.
Xrays and CT of chest to check heart and lungs. Both good.
Nerve testing on hands, legs and feet showed I have osteoarthritis.
Negative for celiac disease. Negative for hyperthyroidism. Negative for diabetes. Negative for any sexually transmitted diseases. Normal pap smear.
Blood test show low vitamin D. (I'm now on supplements.)
Low lymphocytes and high chloride.
Everything else is in normal range. I have done many blood tests with and without fasting in the last year.
I had a constricted urethra which was stretched. Used to have recurring uti's but am now fine. He did say my bladder looked "angry." Whatever that means.
I failed my spirometry test. Dr. Said I had the lung function of a 60 year old chain smoker.
Ive had a mammogram and breast biopsy done which was benign and normal.

Tests I have coming up:
Tilt table test for "Pots."
Pulmonary function test.
Colonoscopy/endoscopy.
ENT for deviated septum and left ear congestion.

My current symptoms: Fatigue, dizziness, muscle weakness, heart palpitations/irregularities, anxiety/panic attacks, shortness of bteath. (The shortness of breath and severe anxiety started the day after my EP study on Feb 5th and I've had it ever since which is why they are doing a pulmonary test.)

Current medications: Vitamin D3, SlowMag (Magnesium/Calcium), .25 Xanax when needed (Which I only take half of one once a day.)

So! Now that you know all that, let's dive into my heart issues.
Symptoms: First started when I was 28 while lying in bed. Noticed my heart skip a beat a few times. Googled it and figured it was nothing. Heart beats irregular when I lay on my right side. Not on my back or left side. When I bend over or sit in a slouched position I get heart palpitations. Also when I eat a large meal. My heart skips a beat and then thumps really hard one time, sometimes that one hard beat even affects my vision for a split second. I belive it's called a PVC.

Tried to get it checked out. Nothing was found.
2 years later at age 30 I went to the hospital for an unrelated problem, they asked if I could feel my heart palpitating, I told them it happens frequently. (At least a few times a day.) They admitted me for 7 days.
Two cardiologist monitored me. Stress test was performed and was normal. Chest xrays, blood tests, normal.
Echo, normal.
One of the cardiologist diagnosed me with afib and put me on a heart medication, the other disagreed and took me off the medication the next day and said it was SVT and wanted to give me an ablation.
I didn't get it. Moved to OH.
New heart doctor. Gives me an event monitor for 2 weeks. Had a lot of issues with device due to "poor skin contact." Inaccurate results.
He sends me to an Electrophysiologist who says those aren't reliable and I need a loop recorder implanted. Went to get one put in and was told I was scheduled for an ablation that was never discussed in office not one time. A mistake was made somewhere. They canceled the whole appointment and sent me to yet another Electrophysiologist.
This doctor did an EP study on me. He said he was VERY aggressive during the 4 hour procedure but could not get my heart to go into afib and felt an ablation was unnecessary.
He implanted the loop recorder. He said no afib has been seen on it since.
He did say I had a small extra p wave but he's unsure as to why. He did a light chains test and blood work to see if it was covid related. Both negative.
He just started 4 months ago but has now resigned.
Current heart doctor, I was crying before she came in. I told her it's been 5 years, I've seen 5 cardiologists and still no answers. She went through all my records. I asked her "in your honest opinion, do you think I have afib?" She said no.
I then asked her "could anxiety and panic attacks cause all this?" She said absolutely.
She did say that I have Bradycardia and Tachycardia which is why she's sending me for the tilt table test as I have been told before that I have the symptoms of pots. She also said she can't find any records of my loop recorder.
I have been to the ER too many times to count in the last few months and each time I go everything comes back perfectly normal and they do it all each time. Chest xray, blood tests, ekg, monitor my HR, BP and heart rhythm.

So after all this, if you're still with me, how is it that I've now seen 6 cardiologist from FL to OH and not one of them have a clue about what's going on with my heart? Is it true that anxiety can cause this many heart irregularities throughout the day? Have any of you had this much trouble getting diagnosed? Does this sound like afib to you?
With my understanding, afib is a progressive disease that gets worse with time. My symptoms have been the same for 5 years. Sometimes I barely notice it, but never has it gotten worse.
I know I'm very underweight at the moment, this is something my doctors have been trying to figure out for a year. I lost 22lbs suddenly with no explanation as to why and no matter how much I eat (and I eat a lot) I can't seem to gain it back. He's sending me to a nutritionalist.
I can feel my heart beat all day everyday, but I think that's because I have no fat left and barely any muscle. I just feel as if I'm withering away and I generally feel unwell.
I guess I'm more so trying to find out how afib really is from actual people and not just from what I read on the internet. I spent 5 years telling everyone about my afib (dr.s and my job) and worrying just to find out this whole time it may not even be afib! This is my heart .. what if I completely stop worrying but something is actually still wrong? I'm just at a loss.
I am also seeing a psychiatrist and want to start medication other than just a temporary fix like xanax but without knowing what's actually going on with my heart, it's hard for him to prescribe anything cause a lot of the ssris and anti anxiety medication cause heart irregularities, so those with existing heart problems typically have to avoid them. So in short, I'm scared to take anything because of my unknown possible heart problem.
Thank you to anyone who may respond. Even if no one does, it feels nice just to get it all out there.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

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