1. < Autoimmune Diseases

Cardiac Sarcoidosis

Posted by craigz20 @craigz20, Jul 26, 2019

Hi All, I wanted to start a discussion on Cardiac Sarcoidosis to share information ! I have Cardiac Sarcoidosis in addition to Mitral Valve Prolapse with severe regurgitation ! I need surgery to fix the valve, however they want to start me on steroids for a "short period" to try and get the heart inflammation down prior to surgery to reduce risks during surgery. I am fairly asymptomatic, meaning my heart function is good (except for valve). Anyone else out there on the same journey to trade info ????

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craigz20 | @craigz20 | Jul 30, 2019
In reply to @becsbuddy "@craigz20 Did you get any results from your MRI on Monday?" + (show)
@becsbuddy

@craigz20 Did you get any results from your MRI on Monday?

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You are so sweet to follow up 🙂 No results yet, usually takes a couple days for them to review them here in the megalopolis of Los Angeles. My medical team has gone radio silence, I guess they are all just waiting to see the MRI. I am bracing for impact, all news I've received lately has been negative so just hoping for a positive bright spot here !!!

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craigz20 | @craigz20 | Jul 30, 2019
In reply to @becsbuddy "@craigz20 Hello, Craig, and welcome to MayoClinicConnect. We’re not medical professionals or experts, but we all..." + (show)
@becsbuddy

@craigz20 Hello, Craig, and welcome to MayoClinicConnect. We’re not medical professionals or experts, but we all have experiences that we share to help each other. If you’ve not yet had them, you can expect an echocardiogram to look at the function of your heart and several other cardiac tests so the doctors can follow your heart’s health as you get treatment. You will also want to start a notebook with your health history, as best you know it, because everyone will ask. Include family history, especially if someone had/has heart disease; ALL medicines you take, including over-the-counter and Chinese meds. Some of these may interact with the meds you will get for treatment. Speaking of treatment, prednisone or intravenous steroids are the best way to jump-start treatment. Last year I was diagnosed with lesions on my brain and the intravenous steroids brought my brain back. There was nothing else. I have a rare autoimmune disease and the doctors are still researching treatment. The steroids kept me alive! Are you seeing doctors at a major medical center? You might feel more confident with a second opinion on treatment. One of the other mentors may know what Mayo Clinic says about sarcoidosis. I’ll let our expert, @johnbishop , see what he can find. Best of luck and keep in touch, please!

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@becsbuddy Thanks so much for the welcome email and resources ! I am pondering having a consult with someone at The Mayo Clinic, especially if I don't feel as if the folks at UCLA have the right answers. Right now my current insurance coverage won't cover that, however will be looking into more flexible insurance policy next open enrollment...otherwise would cause financial ruin to make a change at this time. However I do want to stay connected with those that are seeking treatment at The Mayo Clinic and hopefully share information and support. Thanks so much for your kindness !

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