sarcoidosis diagnosis --> anxiety

I had an MRI two days ago and yesterday the EP called to say there were signs of sarcoidosis (I guess I should say "sarcoidisis or other infiltration," because my understanding is that sarcoidisis diagnoses are hard to make definitively). So my PM plans have become ICD plans, and I have been referred to a specialist at another hospital for follow-up, possible PET, etc.

Edited for brevity:

How do others with this diagnosis deal emotionally and intellectually with the short-term complications and potentially scary long-term prognosis of this condition?




by Gemita - 2020-12-17 14:13:59

Dear Michael,

Firstly I am very sorry to hear your news and I can imagine it is such a worry for you and for your family.  I will leave others better qualified to explain about Sarcoidosis but I just wanted to say that often when given a serious diagnosis we all imagine the very worse that could happen and it so often never turns out to be the case.  I have done exactly the same as you are doing now, when faced with serious disease, reading up on the very worse case scenario and yet I am still here to tell the story and it will be the same for you too.

Michael until you have had a PET Scan or further tests, I would try not to get so far ahead of yourself.  In my experience the reality is never, never as bad as our initial fears.  They do not have the complete picture yet, hence the PET Scan or other investigations need to be made.  That will give them far more information and give you and your doctors a safe way forward.

So, for the moment, I would try not to worry unnecessarily about something that may never happen to you.  The course of Sarcoidosis will be different for each patient in any event depending on your other health conditions and how effective treatment proves to be.  Sarcoidosis may even go into remission.  I also believe that your strength of mind and determination to lead a normal life, being happy and living in the moment will take you far and help you to overcome any difficulties you might initially encounter.  Sarcoidosis is in my family (mother’s side).  My Aunty did very well with very little treatment and she lived a long and happy life

Thanks Gemita

by michaelk - 2020-12-17 14:46:08

for the encouraging words.



by Jdky - 2020-12-27 23:35:10

Hi Michaelk. I went through all sorts of scans (PET included) because my sr wanted to rule out sarcoidosis. And probably like you, I read all the worst case outcomes of it. I ended up not having it, but I understand your anxiety of the unknown potential. In reality, I also read the it can be very treatable and actually is one of the few scenarios in which heart rhythm issues can actually be reversed. I read that in a published medical journal, by the way. Just take it one day at a time. And be thankful every day you wake up to live life again :-) you're gonna be okay 

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