Sarcoidosis

Does anyone have sarcoidosis?I was just diagnosed with this disease last week. We are assuming that I've had it for at least 6 years and my second degree heart block was the result of it. I got a pacemaker 5 1/2 years ago without ever knowing the cause of the heart block!

Recently I had a PET scan and it showed sarcoidosis in my heart!

I will start steroids in a few weeks to hopefully control, or even cure this illness. Really scary!

So i"m just wondering if anyone else has been diagnosed with sarcoidosis.


2 Comments

Sarcoidosis...

by laughingarcher - 2017-03-01 17:13:58

Hi there!  I'm currently undergoing testing for sarcoidosis and/or lymphoma. Got my PM for 3d degree heart block three years ago after about six years of knowing something was wrong with my heart (tho' I couldn't convince my doc of that. Ended up getting PM in emergency procedure while on vacation in Greece. :-(

I hope you are doing OK.  Would love to hear an update!

Cheers!

cardiac sarcoid

by lee53266 - 2017-08-03 07:19:10

Hi there,

I hope you are well.. we had met with my moms doc yesterday, she advised that mom may have cardiac sarcoid. her pet scan is for next week tuesday. would love to keep in contact and share info..

 

best of health to you all.

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