Recently I was diagnosed with cardiac sarcoidosis, ten months after the total heart block requiring a pacemaker. Credit goes to my persistent cardiologist who was adamant about getting to the cause since I have consistently complained of discomfort near the pacemaker plus lately increasing fatigue despite normal labs.

Last week I had a cardiac metabolic PET scan which required high protein, high fat, no carbs diet the day before, then 12 hour fast with lots of water. The test took 4 hours and was performed in a facility where the rarity of my test is maybe one or two every few years. The injection was radioactive and for once I had no negative reaction.

Apparently, the results were so obvious because I had barely gotten home when my cardiologist called and said I needed to come in. I went the next day and he explained the condition, then called my rheumatologist who has other patients with some form of sarcoidosis. Since it has affected a "vital organ", I was put on prednisone, methotrexate, and folic acid.

As ever, there's a lot of crazy stuff on the Internet on Sarcoidosis, including WebMD. I read Mayo Clinic, Sarcoidosis Foundation, plus several studies done as recently as May 2017 in Japan. The info my rheumatologist gave me was dated 2006! I'm relieved to know what is wrong and hopeful the treatment works for me.

Log in or register to write something here or to contact authors.