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Avatar universal

Comments would be appreciated

I have problems with various chest pains in my chest area for the last couple of years.I have been diagnosed with sarcoidosis and have lymphandenopathy in my chest area and had a granumloma removed from my neck.The doctors don't think this is the cause for my problems.2 yrs ago I had a stress test with scans, 1 1/2 years ago I had a holter monitor and echocardiogram  and last february I had a heart cath(no blockages). All I have ever been told is that I have pvc's and pac's and there was nothing else to worry about.3 times since June I have had my heart fluttering and it lasted most of the night and it caused pain and light tightening around in the middle of my chest. Also around september I started having episodes of my heart racing around 120 bpm (I was given atenolol for this and it works).I had had some episodes of this years ago. Yesterday I had a spell at work where I got real sweaty and had a pain in my left chest.It didn't last long. Between pain, sweating and palpitations mostly at seperate times, but lately have been combined a few times I continue to stay nervous.  If you could please comment on the information provided reagarding the palpitations, heart sarcoidosis, coronary artery spasm or anything else that might be relevent to this situation I would appreciate it.  God Bless!!!  briane
4 Responses
Avatar universal

Sorry to hear of your ordeal.

You have a very difficult problem: undiagnosed, long-standing chest pain.  The cardiologist you have seen has gone through the standard work-up, including holter, echo, stress tests, and heart cath.  The bad news is that it is quite possible that a diagnosis for your problem will not be made.  In fact, a rule of thumb in medicine is that the longer someone has had a problem, the longer it can take to diagnose the problem.  The good news is that the normal results on your tests are somewhat reasurring for your long-term prognosis, especially if we ignore the sarcoidosis.

Now, sarcoidosis will uncommonly involve the heart (approximately 5% incidence).  This involvement can also be difficult to diagnose.  The most common presentation is a slow heart rate due to complete heart block.  The second most common presentation is PVCs or ventricular arrhythmias.  Less common presentations include heart failure, SVT, and pericarditis.

The diagnosis of cardiac sarcoidosis depends upon a heart biopsy, which feels similiar to a heart cath.  However, the diagnostic accuracy is only about 25%.  Other tests that some centers use include thallium and gallium scanning.

My best advice for you is to seek a second opinion at a large, academic heart center.  The specific question is whether or not you have heart involvement.

Hope that helps, and good luck.

Avatar universal
I don't mean to pick apart words here, but is it the sarcoidosis in itself that makes my longterm prognosis somewhat reassuring?  would these test results without sarcoidosis have a pretty good prognosis?  Thank you for taking time to answer questions on this form.

Does anyone else have problems similar to this?  If so e-mail me and maybe we can compare notes.   ***@****
god bless!!!
Avatar universal

Your normal test results are reassuring.  However, the diagnosis of sarcoidosis makes the test results less reassuring because none of these tests are very good at diagnosing cardiac sarcoidosis.

Hope that's more clear.
Avatar universal
Thank you and God Bless!!!
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