RecipeForDisaster Posted October 23, 2021 Report Share Posted October 23, 2021 I may have one of these. Unfortunately, the cardiologist who ordered the testing is the slowest, least responsive or reachable guy I have. I have every symptom of sarcoidosis including, of course, dysautonomia. I also have neuropathy for unknown reasons. I hope I don’t have this, but if I do, I’d like to know ASAP and get it treated. This was found on a cardiac MRI, which I need to redo, but it hasn’t been ordered. I don’t see the guy until mid December. He does sound worried, but then doesn’t answer follow up questions or move forward. They are redoing a 30 day EKG (I’ve done it twice, no arrhythmia other than PVCs and bigeminy which are now treated) because they are thinking I pass out because of arrhythmia. My heart rate is never irregular or super fast when I pass out… we are confident it’s not that. But yay, I get to wrestle with adhesive sensitivity for another month. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted October 24, 2021 Report Share Posted October 24, 2021 Well, if you want to know asap about the sarcoidodosis you have the option of ordering a blood test yourself through request a test (only use the direct request a test site) and find a place near you. You find lab near you, go in, they draw the blood, and notify you your result is ready then you go to the web site and get it. The standard blood test for sarcoidosis is Angiotensin Converting Enzyme. It only costs $49. It's the exact same labs as your drs use. I had a granuloma in my spleen at the same a lot of this POTS mess started so I had one ordered by a doc but if I had an unresponsive doc I'd get that test done myself in a heartbeat. You can choose to give the results to your dr or not. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted October 24, 2021 Author Report Share Posted October 24, 2021 I actually had that test done last April. It was high normal. I have a lab slip to get it checked again, thanks to my thorough hematologist, but it also has iron tests that I can’t do for 4 weeks. I would get the labs drawn twice (18 tests) or see about splitting it up, if I thought it was foolproof. From what I read, this is pretty hard to diagnose, and I am hoping I don’t need a myocardial biopsy. Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 24, 2021 Report Share Posted October 24, 2021 @RecipeForDisasterThanks for bringing this up. I did google sarcoidodosis and the skin rashes look eerily familiar. @toomanyproblemsgood call on the request a test i did find one fairly close to where i live. Quote Link to comment Share on other sites More sharing options...
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