My name is XXXXX XXXXX I am the moderator for this topic. I've been trying to find a Professional to assist you, but sometimes finding the right professional can take a little longer than expected, as the Professionals come online at varying times. I wonder whether you would like to continue waiting for an answer…hopefully it won’t take too much longer. Please let me know, and I will continue my search. If you’d prefer not to wait, please tell me, and I will cancel this question for you. Thank you!
Camille - Moderator
I really don't think I have cardiac sarcoid however it seems the risk is high:
-the data I have seen indicates cardiac sarcoid is not uncommon in patients with biopsy proven pulmonary sarcoid and the other heart conditions I have
-consequences of undiagnosed cardiac sarcoid can be severe
-the heart conditions I do have seem to have started at a time of high pulmonary sarcoid activity
-the symptoms I do have remain unexplained
You are quite right, I have spent considerable time on this. I have been (and continue) going to a prominent university teaching hospital, to the Mayo, and to a midwest sarcoid specialist. I have seen cardiologists, pulmonologists, urologists, gastroenterologists, neurologists (I do have somewhat abnormal csf findings..), psychologist, liver specialist, rheumatologists, ENT's,...
As one Dr (Mayo) said.."we are all looking for that 'aha' moment but perhaps things will need to get worse first".
Thanks for your help...